Tag Archives: personal

The Medication Postcode Lottery

20 Wednesday Mar 2024

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We’ve lived here in this small city for 8 months now, owned the house for 9 months – not that you’d know it with us not even being fully unpacked, rooms half painted and half-finished. Despite our slow progress, it’s been easy to settle into life here. Our neighbourhood is calm but cheery. The right mix of students and families. Norwich doesn’t have an awful lot going on, at least compared to London, so there’s less choice when it comes to gigs and theatre, but at least we have some choice at all even if the University is the largest music venue on offer! It doesn’t lack in independent coffee shops and record stores, either. Change hasn’t been so hard, I was expecting more pushback from my subconscious. Maybe it’s just that our home is so lovely it’s making it so much easier to adapt. At least for the most part. Nothing is ever actually so simple…

I knew when we moved I’d have to shuffle some medical stuff around. A few things would have to be re-referred up here, but some would stay based in London where the speciality centres were. I wasn’t expecting to find myself a victim of NHS postcode lottery, though. My new GP flagged it up almost immediately when reviewing my medication list – “oh, that might be an issue…”. Modafinil. It’s a narcolepsy medication, which my cardiologist prescribed to me off-label near the end of 2020 in the hopes it would help the crushing fatigue and cut through the brain fog a bit, give me more ‘useful hours’ to work with. It’s not a miracle drug but has made a marked difference to me, especially in terms of preventing ‘rebound naps’ within a few hours of getting up (which used to be almost daily) and in the amount of focus I have (already terrible thanks to unmedicated ADHD, brain fog makes it far worse). On Norfolk’s NHS prescription board, however, Modafinil is Double Red listed (I presume based on abuse potential, not cost), which means it can only be prescribed for narcolepsy and must be prescribed by a specialist in this disorder. This obviously doesn’t include me. I’ve appealed to the board twice via my GP, but to no avail. My next options are to wait 6 months for my next cardiology review to see if they can prescribe it to me directly again (unlikely as they prefer your GP to do this after the trial prescription) or to pay for a private GP appt and private prescription (expensive to the point of being unsustainable long term). Getting some kind of delayed reprieve from the board based on having taken the medication successfully for three years with only positive effects is, sadly, unlikely to happen.

So as of now, I’ve been almost three months without the medication that helped me manage a bit more like a functioning person. For a month or so as I was running out I picked the days I wanted to take the Modafinil, based on how long I’d have to be awake or how much I needed to do that day, and took my last dose on Christmas Day. Inevitably I started spiralling a bit as I reached the last dose, anxious about losing what function, what hours of clarity and ability I had. It’s been better than I’d feared, in reality, but it’s been quite foggy and I don’t feel my year really started until mid-February. It’s nearly the end of March now and this is the most I’ve written at once so far this year (two coffees don’t really have the same effect). Before this happened, I had no idea the kinds of medications that could be affected by moving to a different NHS prescribing area; I thought it was something that only affected expensive procedures like IVF, or expensive drugs for very specific cancers. I knew that some treatments weren’t available in all areas; years of hitting a brick wall with trying to get the recommended hydrotherapy in my London borough come to mind. It never occurred to me, though, that I should double check that I’d still be able to take all my prescribed medication when I moved within the same country!

It feels pretty cruel when it comes down to it, taking away something that was helping me be more productive, less fatigued, more me. I feel sometimes like I wasted a lot of those three years taking the medication, not learning or studying or writing enough, when it might have been as un-fatigued as I was ever going to get. I’m certainly not giving up my quest to get it back, but there’s not going to be a solution that’s both quick and inexpensive.

The Accessible Home Project pt1: The Stairlift

09 Wednesday Aug 2023

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We have a house. We own a house. I’m still reeling a bit at that fact, and also at the sudden financial necessities like replacing the old immersion tank and getting someone in to look at the spare room to find the cause of that weird smell (is it damp? is it coming from the loft we can’t get into because there’s no ladder?). The costs I was anticipating, though, the ones we knew were coming from the start, are the ones needed to make this lovely little house into one I can live in independently and safely. Before we decided to buy this house, before we decided to buy a house as opposed to any other type of residence, we knew there’d be a number of costs involved to make it suitably accessible. While looking for a home to share together we quickly had to scrap the dream idea of a bungalow as the only ones within reasonable walking/rolling distance of the city, although stunning, were 100k out of budget. We did find one right by the city on its own large plot of land, but we had both decided we’d like some neighbours, and couldn’t take on a fixer-upper either. Neither of us are particularly skilled at home renovations, for my part not even those that can be done from a seated position! Flats, too, quickly disappeared from our searches. Older more characterful flats were invariably not wheelchair accessible from the street, and the affordable newer ones too small – plus we worried about noise issues and lifts breaking, both things notorious in apartment buildings, not to mention increasing service charges. It made more sense to buy a house and spend a lump sum of money making it suitably accessible to last the next 10+ years than to pay increasing charges year on year for somewhere that wasn’t our first choice.

So what needs doing? The list has three major things, and a couple of minor things that we can mostly buy/install ourselves. Of the majors, the stairlift was the obvious priority, followed by replacing the back door with a level access one as my wheelchair takes up most of the width of the front hallway at the moment. Installing a downstairs loo and shower room in the current cloakroom is a much larger and more expensive project so will be done last. After making enquiries, we were cautiously optimistic that Richard, the lovely surveyor from Norfolk Stairlifts, would approve our creaky wooden stairs, as the previous owners told us that there’d been one installed when they bought the property, so we knew the stairs had fit one at some point. Soon after our home assessment I visited the showroom and tried out the suitable model of stairlift for very narrow stairs, and one with the manual swivel mechanism that our equally narrow landing demands if I want to avoid constantly bashing my knees into the wall. It’s going to be a tight fit for both me and for anyone using the stairs, but it can be done. I’d been managing the stairs for the month since we moved in, but it was difficult and causing some painful and sleepless nights. It’s also no fun rationing drinks to avoid having to go upstairs to the loo too often, then sitting down for a wee on screaming hips with a heart rate of 110.

The stairs soon after we moved in (you can just about see my wheelchair charger at the bottom!)

The very good news about the stairlift is that it was about half the cost of what we’d thought it would be as we didn’t need a curved rail, so I could pay for it myself without needing any contribution from Chris for something that he won’t use and will probably find himself infuriated by at times. The less good news about all our access renovations is that we don’t qualify for any help towards costs. I plan on expanding on this in another post, but the council’s Healthy Homes scheme approves financial aid primarily based on receipt of certain benefits and I lost all hope of getting back on ESA when I moved in with a partner because [rant about the system saved for other post]. To decide eligibility without these benefits, they look at income; again, both mine and his. I didn’t think we’d stand a chance based on his income, but at least I have enough in those savings to cover the stairlift and maybe half a door largely thanks to Arriva London Buses. I might even be able to keep my Emergency Wheelchair Fund untouched, which would be ideal as my current one is slowly rattling off this mechanical coil. I do find it frustrating on his behalf that Chris is having to pay for some of the access fixes, but at least he will use the back door and the downstairs bathroom. Despite his reassurances I’m still trying to swallow the Disabled Partner Guilt (which, again, is for another post).

The stairlift is being installed as I type. I’m marooned upstairs while this is happening as Ronnie, the technician, needs the stairs clear for all his equipment and we only have the one bathroom for now. Chris has escaped to work in the coffee shop to avoid the noise and disruption but it’s not been too loud so far (I can always put my headphones on). It takes 4-5 hours, which seems a very long time, but everything has to be measured and done so precisely (conversely, I’m told it takes under an hour to remove a basic straight stairlift!). A few hours doing chores from bed is a small price to pay for years of better accessibility in my own home!

Update:
The stairlift that best suited my needs is a Handicare 1100. It’s very slim and the rail sits relatively close to the wall which leaves just over half the stairwell free for pedestrians. The rail is straight because the hallway and landing are also very narrow (as in most Victorian terraces) so I find it best to use the external remote control to move the chair a few steps up after I’ve come downstairs or else it gets in the way of the kitchen door. Once I’m at the top or bottom of the stairs, I pull a little lever under the seat to swivel the chair around (using the bannister to push myself) so I can get off. There’s a little switch under one arm to raise or lower the footrest, and there is a seatbelt which they recommend is used (but won’t revoke the stairlift if you don’t). There’s also a key which you can use to lock it, meaning when our toddler nephew visits he won’t be able to take himself for a ride on Auntie Nina’s Fun Chair. We were very happy to find that the stairlift would not come into contact with the two plug sockets at the bottom of the stairs – there was no need to drill through into the kitchen, and I can still use the second socket for charging my powerchair until we make it a base in the utility room. It’s not too noisy either, just a droning hum that sounds a bit like electronic bagpipes to my mind! It would be quieter if we had carpet, but we’re not sure we want any carpeting in the house yet let alone on the stairs – Ronnie tells me that he’s worked a few jobs installing complicated stairlifts when the client casually mentions they’re getting the carpets redone in a month! I promised him if we did get carpet it would just be a runner. We have 101 more things to get done before we even think about the stairs anyway.

Here’s what it looks like in our house:

Now, onto the back doors – and the never-ending task of choosing paint colours!

Airlift

27 Friday Jan 2023

Posted by in Housing, Uncategorized

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Things have changed. Suddenly, or at least it seems sudden, I’m not looking for a flat to rent. We are looking for a house to buy. Together. It’s still made more complicated by disability and my lack of work, but it’s within sight. It feels sudden because for 5 years of our relationship housing was something we dealt with separately. For 5 years I tried to find somewhere appropriate to live, with the assumption I’d be there on my own. C moved between rented rooms, his own flat, here, and his family. Then the pandemic happened and he was here with me, sacrificing months of rent money to make sure I wouldn’t be on my own during lockdowns. For almost two years we were bubbled, making a go of being a “household” and learning just how much we could get on each others’ nerves but also just how well we worked as a cohabiting couple. It was that, the pandemic. Those two fraught, surreal years that now comprise a quarter of our relationship and felt like a matter of weeks and an eternity all at once.

Then more things happened, rather quickly: I inherited some money when my beloved grandmother died, which pushed me out of qualifying for housing benefit and made the prospect of getting a rented flat a lot more difficult; C got a better-paid job; my mum sold her old house and pledged the profits to me for housing. Suddenly the two years of cloudy pandemic uncertainty cleared, and we realised we’d jumped over that “together but separate homes” stage, realised we’d already been doing that for 7 years. In that time many couples have long since moved in together, and I have had many moments of upset and frustration in that time about my access needs and the horribly punitive benefits system stopping us doing it sooner. But those things fell into place, almost without us realising what picture they were creating, and soon without really having any formal conversation about it we were discussing “our home” as a real thing that was actually going to happen. Is happening.

I don’t know what kept me from truly believing it, but I didn’t think this would happen to me even over the last several years of this relationship. Somewhere in my mind I felt a certainty that I would be in a state of permanent failure-to-launch, that the brain-and-body maladies would keep me stuck living in this flat full of 20 year old ghosts, or worse – sent to live in another depressing poky bedsit in a rundown block attended by disinterested and patronising support workers. That’s where my mind kept going in the years I was looking for housing, that I would be stuck there again in a situation worse than remaining here (where I can still see scenes of violence and fear play out like holograms in every room). In all honesty, I just didn’t think about the future because I didn’t know if I was going to have one. I definitely didn’t think it would involve someone else, and there are a lot of feelings to sort through still – some “normal”, and some from the darkest recesses of my brain. It’s funny how even positive things can stir up harmful emotions when you’ve accustomed yourself to feeling undeserving. I’ve spent much of the last 6 months telling myself that I am worthy of this, that I’m not unconsciously pressuring (or hypnotising, or bewitching) C into wanting to live with me, and that he’s a grown up who can make his own decisions however illogical I find them. He wants to live with me. He wants to own a house with me. We want our life together.


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

 

The Never-ending Existential Crisis of Chronic Fatigue

31 Friday Jan 2020

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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.

 

The 10 Year Challenge – dealing with change.

23 Wednesday Jan 2019

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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.

2009c

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

03 Sunday Jun 2018

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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

26 Thursday Apr 2018

Posted by in Blog, health

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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.