Category Archives: Blog

The Good Samaritan

16 Tuesday Mar 2021

Posted by in Blog, Disability

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I wrote this a year ago, the night it happened. I wanted to get the details down while they were fresh in my memory, but as it turns out this didn’t matter. A police officer came to my home a few days later, and told me that because the incident had happened off the bus they couldn’t use the bus CCTV to try and identify the man because it would “violate his right to privacy”. The (male) police officer also suggested that the man might have honestly “just been trying to help”. Because of lockdown and my health risks, I’ve not been on a bus since and that’s been the best help in dealing with this. I’ve decided to post it now, though, because of the outpouring of stories women have been sharing since Sarah Everard was killed and because disabled women are at risk too – often under the guise of “assistance” like this. 

Two men are facing me, sitting in seats separated by the aisle; it was clear they’d been having a conversation, thrown together by late night commute. Talk quickly turned to the wheelchair ramp, which didn’t want to go back in. We sat while the alarm beeped and the recalcitrant ramp moved a few centimetres at a time towards its goal, sharing weary head-shakes, eye rolls, “oh TFL” sardonic grins, until eventually the bus was able to move off. I learned on the short journey that the man on my right was heading somewhere unfortunately far off the night bus route and not looking forward to the 40 minute walk. The man on my left asked me some questions, none about my disability, which I answered coolly but politely (my age, why I was out so late, if I needed help). It’s ingrained in me not to ignore questions, even from strangers. Say something or it’s rude, but include as little information as possible if you don’t feel like a conversation. Politeness will get you everywhere, including into trouble.

At my stop the ramp deployed properly but then, of course, refused to return to position. The driver got out of the bus, and excused me from trying to assist. Wishing him the best of luck, I got around the corner of my road before stopping for a minute to answer a message on my phone with my dominant hand, the one I use to control my wheelchair. I can hear someone coming up behind me, and move over a bit to let them pass with more room.

“Hello!”
To my surprise the man from the left hand side of the bus is walking up to me.
“I just wondered, did you need any help?”
I didn’t remember him getting off the bus at my stop, but maybe since the ramp was taking its sweet time going back in, he had time to come and ask – many non-disabled people offer me assistance like this in the average week, both underestimating the power of my electric wheelchair and the extent of TFL’s accessibility infrastructure (if you’ve never needed to use a wheelchair ramp on the bus, for example, you may presume the driver is about to leave without letting a wheelchair user off, but the doors need to close for the ramp to be deployed).
I said no thank you to his offer of help, and this where most people stop.
“But you must need help!”
Again, no thank you, I explained that I manage this journey into the city and back multiple times a week (slight embellishment for emphasis on my independence) and don’t need help getting into my own home. He changed tack:
“What is your name?”
I couldn’t pretend to be distracted this time. My mind sticks on Elly Higginbottom. “Elizabeth”.
“Elizabeth… Elizabeth, oh Elizabeth…”
the wavering red flag I’ve felt since he appeared on my road suddenly springs upright
“I think you should probably go back to the bus” (although I was vaguely aware of having heard it drive off a moment before) “you don’t want to miss it”
“Let me help you, Elizabeth”
He speaks gently, but as if he’s already decided on the course of action and he’s just asking first because it’s a social norm.
“No it’s okay, I’ve been travelling on my own since I was a teenager, I don’t need help”
“No Elizabeth, where do you live? Do you live here?”
Deflect, deflect, deflect (and lie) “About five minutes away, look it’s nearly 1am I just want to go home and go to bed it’s really late, so…”
“Can I come with you, walk with you?”
At this point, I am acutely aware that the late hour means that most of the people on my residential road are in bed. Footfall is minimal, as are passing cars. My wheelchair has lost some battery over the course of the evening and is now running at a medium-fast walking pace at best. The priority is not to let him know where I live, which means cutting contact with him there at the end of the road.
Direct, direct, direct “No, sorry. I just want to go home, have a cup of tea and go to bed”
This seems to encourage him in a new direction, unfortunately.
“Can I come home with you and have a cup of tea?
“No, sorry.”
“I can stand outside even, not in the house, just a cup of tea”
“No” – no more “sorry”, because the red flag is getting ominously brighter
“Coffee”
“No, I just want to go home and go to bed”
“Can I not come for one cup of tea?”
“No, sorry [argh] I’m not going to take a stranger home with me in the middle of the night” (slight lie, ask my second year housemates)
“But I won’t be a stranger soon, we are at the beginning of something”
fifty fucking red flags are waving in my face
Now desperate, and not sure when I went from feeling hassled to actively scared, I try to override my British-Canadian double whammy of natural politeness and the wobble in my voice.
“Leave me alone please. I don’t want you to come home with me and I don’t want to talk to you any more.” Said as forcefully as possible, being very aware to put on an apologetic smile at the end to dampen the rejection. Everything in me is screaming “don’t make him angry” so the urge to just keep him placated is overwhelming, but also things have been slowly escalating in the last three minutes and I am very worried about where they might end up. I start to silently pray for someone to come walking past.
“You don’t need to speak aggressively to me Elizabeth” I think I do
Since he mentioned coming to my home I’ve been thinking of what is open at this hour nearby on a weeknight. Nothing on the parade of shops to the left, the corner shop closed two hours ago. The pub on the right? No one’s in the beer garden having a smoke, so I can presume the doors are locked. I’d have to roll 15 minutes into town to find anywhere open, and he already knows that isn’t my way home.
In utter desperation I use my last card.
“If you don’t leave me alone, I’m going to have to call the police”
“You don’t have to do that, Elizabeth, I am not-“

I see a man on the other side of the road, strolling briskly in the direction of my flat. I immediately cross the road (thank heavens I stopped on a drop kerb) and go after him, occasionally shouting to try and get his attention, but he is wearing headphones and doesn’t hear either me or my high-pitched (and usually ineffective) wheelchair horn. I follow him for close to five minutes, passing my house on the other side, never getting closer than 2 metres away thanks to the reduced battery life, and too scared to turn around to see if there’s a figure in a red hoodie following me. I think about calling the police but don’t think their priority in North London at night is to come to the aid of someone who may or may not be being followed, and in any case the local station closed down years ago and it could take hours. By the time the man with the headphones crosses the road at a point where I can’t follow him, never knowing that I tried to get his attention, I’ve made a list in my head of anyone I know nearby who might be awake (but still probably isn’t). I can’t hear footfalls over the sound of my wheelchair, but I don’t want to stop so I take a convoluted route through the residential side streets, making sure that if he’s still following me I could still be feasibly “going home” (and realising that I am still considering his feelings although I can’t tell if it’s out of tact or fear of angering him). Eventually I stop and look back. Nothing. He hasn’t followed me. My only worry now is that if he was savvy enough he might have gone up and down my road looking for a wheelchair ramp. I call my upstairs neighbour, guiltily aware that I will most likely be waking him up, but after three attempts realise his phone must be on silent. Scanning mentally through the rest of my potential awake people list, I message the neighbour who lives near the end of the road where I had the encounter with the bus man. She is in bed, but says she’ll stand at the window and look out for anyone wearing a hoodie. I know this won’t help if he’s found my house in the meantime, but at least I don’t feel quite so alone. Forty minutes after getting off the bus, I come back onto my road from the opposite end to the bus stop, barrel up the ramp to my front door and put the chain on after it shuts. 

Lockdown Privilege?

17 Friday Apr 2020

Posted by in Blog, Disability, Mental Health

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So it’s been almost a month of lockdown in the UK, and we’ve been told there’ll be another three weeks on top. No socialising with those outside of your household, essential travel only, no unnecessary trips outside. Many people I know are struggling with this, missing friends, their social lives, even work. But me? I feel in a weirdly privileged position because not very much has changed for me at all, if anything things are better than they usually are. I don’t know if that’s more fortunate or a sad indictment of my normal daily life.

I’m feeling fairly mentally resilient at the moment –  this is a situation that I am not only prepared for, but thrive in. Because of my varying health I tend to only leave the house a few days a week, not usually to socialise, but often just to write, or read newspapers in the coffee shop as I find it easier to concentrate out of the house. Replacing the coffee shop with a Nespresso machine was fairly simple, a bit harder to find my motivation though (more on that in a bit). My quizzing life, too, has been almost seamlessly replaced with an online league via Zoom, which has zero accessibility issues for me unlike most of the venues we quiz in normally. I’ve been out a few times for rolls around the neighbourhood – not “exercise” but arguably good for mental health and vitamin D levels – except the fear of contagion slightly diminishes the mental health aspect, so I have invested in a hammock for the garden so I can enjoy the sunshine secure in my safety.

 

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A rather nervous roll around the neighbourhood.

 

Self isolation means a lot of people are spending more time on their own than they ever have before, but for me and Chris, my partner, it’s been a sudden cohabitation simulation! He knew I wouldn’t be able to physically cope on my own for however many months we thought this might last, so just before the lockdown was announced he went back home and packed a bag of clothes, cooking ingredients (yes really!) and his Apple TV plug in. Unlike normal life, where I mostly rely on ready meals, I’ve been having fresh home cooked meals every evening and company for most of my waking hours. I’m so used to being alone for most of the time, it’s both weird and lovely having him here all the time like this.

Lockdown has made me feel a little pressure to *do things* while it’s on, a sort of pretend deadline since I don’t actually have a job or commitments to return to when it’s over. I’m ignoring the existential doom of the latter fact and enjoying having some structure via activities which I will definitely carry over to my normal life: Duolingo (picking up Hebrew again after having to drop out of my postgrad course); planning out short stories  after maybe 10 years since I last wrote fiction; and photography – earlier this week I had an email from the editor of the local independent newspaper asking if I could go and take some shots in my area of pictures and messages of hope people have put up in their windows, which I was more than happy to do. At normal post-work rush hour, the streets were nearly empty of people or traffic, and the air smelled like grass and trees, not of car fumes.

There is a down side to lockdown life, even for quasi-hermits though: everything medical has been pushed back months, if not more. It’s understandable due to the unprecedented situation, but when I’m still having allergic reactions to unknown triggers, and the deteriorating hip situation was only very slightly ameliorated by a new mattress, the fact I likely won’t see either the allergy or pain specialists this year again is frustrating. I’m still talking to my GP about managing the allergies/MCAS?/whatever is going on with that, but still have a whole list of tests at the allergy clinic to get through that can’t be done over the phone. Ditto with finding an effective regimen for breakthrough pain. I have waited years for treatment before though, I can grit my teeth and wait again.
However, one long delay has made me feel rather lucky despite it being a major bugbear for the last few years – housing. Self isolating in my dad’s large, airy ground floor flat with garden access (and, notably, without my dad!) is far easier than I imagine it would be in wherever I move to next, where I don’t expect I will have a garden of my own or anywhere near as much room to temporarily cohabit in. So I guess I can be wryly thankful to the council for their mismanagement of my housing case up until now.

I’ll sign off with this picture of me being a pod-person. I hope you’re all keeping safe and doing okay!

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cosy in my cocoon

 

Force Majeure

16 Monday Mar 2020

Posted by in Blog, health

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Priorities have changed so quickly in just a few days.
Housing? Not important.
Getting mental health support? Not important.
Attending hospital appointments? Not important.
All that matters is staying healthy and not contracting the virus raging around the globe at the moment. I’ve not had a flu or other major virus since being diagnosed with heart failure in 2018 and I don’t want to put it to the test with something so catastrophic to people with existing heart or lung conditions.

I don’t know when normal life will resume. It’s hard to get my head around the scale of this. It’s unprecedented in my lifetime, my parents’ lifetimes, my grandmother’s lifetime. Friends are losing jobs, businesses will shut down due to lack of customers. People I know are going to die. Everyone will lose loved ones. It still doesn’t feel real.

We’re considering decamping to my grandmother’s for the next whenever because there’s so much more space than in this flat, and if my dad gets ill then my gran can still be looked after without risking bringing in outside help. I’m waiting to hear back from my dad, but my cousin has offered to drive us up to so we don’t have to use public transport. We need to find out whether I can get my prescriptions sent up there or if I’ll have to change GP surgery for the time being first though. No point quarantining to stay healthy if I get ill from not having my meds. I feel so privileged that my partner has offered to stay with me throughout this, even though he could go back to his flat or his family home. It’s a huge sacrifice for him, if he stayed alone he would have far more freedom.

Please stay safe out there (or in there!). Practice social distancing, and good hand hygiene. If you or someone you live with has existing health problems, stay in if possible and limit physical contact with each other if you have had contact with others outside. Keep an eye out for your elderly and vulnerable neighbours. This pandemic has already brought out the worst in people, grabbing supplies from each other and hoarding essentials when some have none – now it needs to bring out the best in us.

 

The Never-ending Existential Crisis of Chronic Fatigue

31 Friday Jan 2020

Posted by in Blog, Disability, health

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Excuse the mouthful of a title, I’m too tired to think of a clever one.

I’ve spent most of the last week in bed, alternating between silently cursing at my body, crying self-pityingly into my emotional support plush toys, and (mostly) sleeping. Post-exertion fatigue hit me like a truck after I dared to go out for a moderately ambitious date day on Saturday. Then yesterday the rage and anger finally settled, self care mode switched on, and I made a series of very small, achievable goals – the last of which was to write this blog post, some of which I’ve been meaning to expand on for quite a while.

These fatigue crashes have been more and more severe since 2014. Although I’ve never been “well”, at least since I was in my tweens, I can pinpoint the day Things Got Much Worse. February 14th 2014, the day I moved across London, once again hopping from one parent to the other (somewhat easier when they’re in the same city, let alone the same continent). That move, although aided by my dad and my then-partner, precipitated a catastrophic crash – whether from emotional or physical stress I couldn’t say, but it was this which led a GP to prescribe me painkillers for the first time, and refer me to the UCLH Hypermobility Clinic for assessment and diagnosis. Since then I have lost count of the crashes, but the pattern is always the same: I never quite manage to regain the ground I’ve lost before the next one comes.

Thinking about that, the ground lost and not made up, has made me philosophise this week in between the sleeping and gradually dissipating rage. What am I fighting with myself for? I never had health, I just had a genetically-cursed body trying desperately to keep up with those of its peers, constantly wondering why I found everything so damn difficult when no one else seemed to. I spent 15 years thinking I was just unfit, or that eventually my body and mind would align and reconcile with what was expected of them. I think this could be called internalised ableism, no thanks to the doctors who told me these things. “Everyone gets aches and pains sometimes” turned into honestly believing until I was in my mid-20s that everyone was in pain constantly because that was my reality. From a young age I was constantly trying to attain something that I couldn’t reach, but didn’t know I had no chance of gaining – a body that was not disabled, that did not hurt, that did not inexplicably need so much more rest than others. Similarly, I cannot fight to regain health I didn’t have to begin with. My body does not need me to be angry with it –  that is energy I could be spending elsewhere –  it needs comfort, rest, and patience, no matter how hard it is to give it those things when I feel it is betraying me.

You cannot hate your body into being healthy

Self-care mode involves making aphorisms on design apps.

 

Of course, reconciliation with an oppositional body is only one aspect. The rage and tears of the last week were not only from frustration with my body, but pent up from years of watching my life pass before my eyes un-lived. I have always been a late starter. I walked very late (although I was a precocious reader, go figure). I did my GCSEs a year late thanks to moving countries. I did my A-Levels in my early 20s, because my late teens were a nightmare, and subsequently started university late. Of course, I also graduated a year after I was supposed to because of my health. I am reconciled with being permanently behind other people in their early 30s; what I struggle with is feeling like all I am doing with my life is sitting and watching the days pass. I used to have dreams I felt I could achieve despite as-yet-unnamed pain and fatigue issues – to travel more, work abroad, continue teaching English, continue with photography on a professional level. I’ve written before about the pain of not even being able to write posts like this one, of the fear that I won’t even be able to connect my random strings of thought together in a meaningful way one day, or any day again. Brain Kittens refers playfully to my legendary distractibility; added fatigue makes the ability to keep a train of thought going far far harder. But even when I have slightly more ability than I do at the moment, I still get a nagging feeling that there’s something more I could be doing right now, something to set myself up for the future, just in case things get better. Just in case. In the last six months I’ve bookmarked disability internship schemes, evening postgrad journalism courses, BSL classes, activism bootcamps, but the reality is the same: I cannot throw money away for something I won’t realistically be able to manage, or that I would make myself seriously ill attempting to keep up with. When I can reliably get somewhere once a week, when I can make all my medical appointments in a month, when I can go out two, even three, days in a row without having to rest at home for a week afterwards, that is when I can look at these exciting things.

The truth is, though, I don’t know if I will ever get to that point. I’m waiting for a miracle that might not happen. However nauseatingly positive* it sounds, to avoid falling into complete existential despair, I have to cling onto that little shred of hope that one day things might get better. That one day I will be – just a bit, but enough – better.

 

[*Nothing wrong with being positive, of course, but I’m snarking mildly at the ill-girl tropes here.]

the intersection

22 Monday Jul 2019

Posted by in Activism, Blog, Disability, health, Mental Health, Uncategorized

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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.

 

Diagnostic Curveballs

26 Thursday Apr 2018

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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.

 

Further Adventures in Bureaucratic Incompetence.

10 Tuesday Apr 2018

Posted by in Blog, Disability, Housing, Mental Health

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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.

16 Friday Feb 2018

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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).

fleurs

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.

The Resolution Solution

03 Wednesday Jan 2018

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I tend to make the same New Year’s Resolutions each year: read more, write more, do my physio, wear my bruxism mouthguard, be happy with my body shape and size as it is. This year I’ve also resolved to start swimming again (aim for once a month), and see my mum more (again, once a month would be a great increase). I try not to  see them as firm resolutions as much as goals it would be nice to achieve, but even this softening of the term doesn’t stop me sometimes being hard on myself when I don’t manage to keep them up, even though it’s ill health and not laziness or lack of willpower that causes this. Depression stops me enjoying books, which are, when being read, my greatest joy; writing is hard to focus on when fatigued or in pain, or when the brain kittens are playing; the mouthguard hardly got worn at all in the first 10 months of last year thanks to a rogue wisdom tooth.

So, this year I’ve decided that in addition to my standard well-intentioned resolutions, I will add another: I resolve to try my hardest not to be angry with myself when health, physical or mental, prevents me from keeping a New Year’s Resolution, or an appointment, or a social event. All being angry with myself does is encourage me to wallow in self-pity over my shonky collagen and propensity to sadness, and I’m not a fan of self-pity when it comes to things I cannot change, where I cannot turn that self-pity into dogged determination. If I only read 16 books again, as I did last year, so be it – at least I read some books. If I only wear my mouthguard every few nights, that’s better than not at all. One thing I am determined to stick to, though, is the writing. One of the reasons I set up my Patreon page was to give me an impetus to write, if not to a schedule, then at least with greater frequency. But, if  my health gets in the way of even that important goal, then I will try to remember the last and most important resolution for this year.

 

 

It’s just a saga now.

05 Tuesday Dec 2017

Posted by in Blog, Housing, Uncategorized

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I’m sorry for the gap between posts. I’ve had a cold and apparently when you’re already chronically  ill, a cold turns into “three weeks of being mostly asleep”. Not that much has happened in terms of housing; the council move at a rate that doesn’t exactly suggest that they work with people in danger of becoming homeless. Also, a couple of weeks ago the Guardian’s Disability Diaries , which I was a contributor to, were published and there’s been a lot of good feedback. I hope it helps in a small way to change public preconceptions about disability of all kinds.

Before I “update” (spoiler: no actual progress) I will share some exciting news. I finally decided to make a Patreon page.  Readers of this blog are, of course, under no obligation to sign up, but this blog is just one small aspect of what I hope to be able to do in terms of disability awareness and activism. Already I’ve reached my first funding goal, which means I’ll be meeting with a designer next week to revamp the style of this blog, ahead of registering a domain name. Fancypants!

So, the housing saga, and it is a saga at this point. It’s almost a year since I was told to find somewhere else to live as soon as possible, and I keep hopping back and forth aimlessly between the council and private rental options. Neither have been productive.
This month I’ve been focussing on the council, as I received a letter last month telling me that the “medical officer” had written to my GP to verify my various health claims (so that I could be referred to the council’s “housing association” partner). First problem – aside from the fact I went through four GPs there in a year due to them all leaving or retiring, my surgery closed down at the start of October after failing its CQC inspection. I had an appointment with the named GP at my new surgery last week to explain my housing needs and she seemed understanding and receptive, though I feel bad asking already-overstretched doctors to do things like this, when I’ve already uploaded reams of medical evidence to the council’s housing denier bot. Second problem – As I learnt in January when my mental health took a nosedive, the hospital mental health team’s notes don’t get copied to the GP’s system, so this sent me into a small tizzy when I realised that a GP would be unable to confirm the mental health history I had outlined to the council. Trying to rectify this was a small saga in itself:

I called the council, on the number at the top of the letter. There was a housing extension there, but as it turns out, the officer was there only for questions about rent. Any other housing queries had to be sent to the Housing Office. No there is no direct number, or email address. No he could not pass a message onto the Medical Officer, because they didn’t work in the same building. So, lacking any other option, I went back to the wretched hive of scum and villainy known as the Enfield Housing Office. “Do you have an appointment?” No, because there is no way to make an appointment. I took a seat as requested, and watched various vulnerable people having their needs denied. Eventually my number was called and I wrote down the information to be passed onto the medical officer. “She’ll call you, wait here and she’ll call you” “Is she not here?” “No, she’s upstairs”
So, I sat in the Housing Office for 90 minutes until someone who couldn’t be bothered to come downstairs and talk to me phoned me instead to verify that yes, someone had passed on the post-it note with the mental health team’s details. How very dehumanising. 

Then, on the 22nd of November, a text from a lettings agency:
“Enfield Homefinders have forwarded your contact details” – without my permission to do this, I might add. They included a link to a property on RightMove. It is not wheelchair accessible. So, the council gave a third party my phone number so they could advertise properties to me, without also passing on my access needs (which go beyond just needing level access). Superb. I was polite in my reply, but made it clear that I didn’t want either of our time being wasted by being offered unsuitable properties. I strongly suspect that this is nearing the extent of what the council will actually do for me, although I’m not aware of what their legal obligation is if they don’t actually have any suitable properties themselves.