Lockdown Privilege?

17 Friday Apr 2020

Posted by in Blog, Disability, Mental Health

≈ 1 Comment

Tags

, , ,

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.

 

IMG_4629

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!

IMG_4735

cosy in my cocoon

 

Force Majeure

16 Monday Mar 2020

Posted by in Blog, health

≈ 2 Comments

Tags

, , ,

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

≈ 7 Comments

Tags

, , , , , ,

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.]

Access Review: National Theatre/Lyttleton Theatre

22 Sunday Sep 2019

Posted by in access, Accessible London, Disability, Reviews

≈ Leave a comment

Tags

, , , , , ,

It’s been quite a while since I’ve done an access review, but since I’ve been to the theatre a few times recently I thought I’d dig into my notes and do another one. After all, this was what my abandoned blog and remaining Facebook page are concerned with (I was overwhelmed juggling two blogs and a FB page, so decided to write the reviews here and crosspost to the FB page!)

I took my dad to see Rutherford & Son at the Lyttleton Theatre, part of the National Theatre complex on the Southbank at the start of August. As with most access reviews, there’s good and bad stuff in here that I hope you will find helpful!

Getting Tickets

Lets get the bad news out of the way first, the National Theatre is one of those theatres that wants disabled patrons to sign up to an access list first before they are able to book tickets. However, unlike many of these schemes, they do not require an overly intrusive “proof of disability” such as scans of PIP letters or blue badges which was appreciated. They ask about specific needs, which include aisle seat, wheelchair space, audio description or captioning. After getting confirmation that my access list application had been received and filed, I could book the wheelchair space and companion tickets on the website, which was also greatly appreciated. There’s nothing more galling than having to phone to book access tickets as the only option, only to have 20 minutes of hold message telling you how much easier booking online is.

 

Entrance

Perfect. Being a large complex of three theatres next to the wonderfully accessible Southbank Centre and BFI, the National Theatre has full wheelchair access. No platform lifts, no precarious ramps. Entrance to the Lyttleton Theatre was well signposted, and while a good portion of the audience headed for the stairs or the lift, we were shown to a door in the wall which led to the wheelchair space at the top of the stalls seating. And here I found the only problem…

 

Wheelchair Space

With four spaces available, the Lyttleton Theatre has more wheelchair spaces than the average London theatre, where sometimes there are only one or two for a capacity of hundreds. All of these spaces are in Row V, at the back of the stalls where the view is still acceptable. However, something was missing in Row V – the companion seat!

IMG_3496

 

Those are my pixie boots, and just in front and to the left of them is my dad’s seat, in the next row down. The purpose of  a companion ticket is to support the disabled person if necessary. If I had needed help during the performance, like needing to leave to go to the toilet, or help with emergency medication, it would have been disruptive for the rest of the patrons as my assistance wouldn’t be right next to me and I’d have had to adjust my wheelchair (beeping, whirring) to reach him! Also it did make for quite an isolating theatre experience being up on my own next to the sound desk!

If someone with far greater needs than myself (such as needing assistance with drinking) were put in this wheelchair space, then there is no way their companion would be able to take the booked companion seat, and I wonder what would happen then?

Services

No complaints here either. The atrium of the Lyttleton Theatre is in the wider National Theatre lobby, and the bar and café are on the same level as the entrance and level-access door to the theatre.

Toilets

Fine – roomy, red cord dangling as it should be, no nappy bins blocking access. Though it should be noted that the toilets (including the wheelchair accessible one) are located in the main foyer of the National Theatre, and any members of the public can come in and use them so you may find yourself waiting if a passing wheelchair user gets caught short!

 

Overall, because it’s part of the larger National Theatre complex, the Lyttleton Theatre is very good for access – notably when it comes to booking tickets and getting around the building. The only way it let itself down was the set up of the wheelchair space and companion seating, which should be an easy enough fix. As always, I will update if I hear anything back from the theatre or someone else visits and gives me news of positive change!

 

Housing Doldrums – when is progress not actually progress?

08 Thursday Aug 2019

Posted by in access, Disability, Housing

≈ Leave a comment

Tags

, , , ,

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

22 Monday Jul 2019

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

≈ 3 Comments

Tags

, , , , ,

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

20 Wednesday Feb 2019

Posted by in Disability, Reviews

≈ Leave a comment

Tags

, ,

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.

IMG_1891

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.

IMG_1892

 

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.

IMG_1893IMG_1894

 

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!!

IMG_1895

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:

IMG_1896

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.

IMG_1902

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.

23 Wednesday Jan 2019

Posted by in Disability

≈ Leave a comment

Tags

, ,

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

Posted by in Disability, health

≈ Leave a comment

Tags

, , , ,

[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

≈ 2 Comments

Tags

, , , , , , ,

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.