Time is passing.


Well, in two days I’ve got Stanmore, again, which I’m trying to look forward to. Going to try to do it in one day again, and to try to get as much out of the single appointment as possible – If there is a second appointment, I probably won’t be able to afford to get to it, even with the disabled person’s railcard.


Just failed another Mod 1, so am about to take on the eighth attempt in December.


The kitchen ceiling is dripping in three places, and the bedroom wall has filled up with black mould because the outside downpipe has broken. Heating repair is coming on Monday, gutter repair was supposed to be today, but I’ve heard nothing yet.


I had to fill in a reapplication for PIP, which arrived on the 3rd of October and was due in for the 3rd of November. I got it sorted eventually, but it took me ages and again there’s something cripplingly embarrassing about having your best friend and their Mum both doing a close-reading of exactly how you wash your hair and feed yourself and wipe your arse. Was frankly mortifying to realise how antisocial I am now; How much I don’t like to see, or talk to new people, and how much it’s getting worse. It wasn’t that long ago, in lifetime terms, that I used to willingly go to societies, and parties, and to find value in meeting new, interesting people. My attempts at such this year turned pretty quickly into realising “I like the swimming, but I wish there were no other people” or “I like riding, but I wish I was the only person at this biker cafe” and, well, I’m not sure if that’s mental illness or just utter disillusionment with all other people. Anyway, it’s been coming on for a few years, but now other than Dearest and Best Friend, I’m a complete hermit, and even seeing them is a little exhausting.


In good news though: I’ve been swimming a couple of times, I went to Harrogate and got myself a nice lambswool jumper and a load of buttons, and my lacemaking is getting on a bit.


All I really want right now is to be out on my bike, or to be curled up in the warm with someone lovely, or just in general for it to be not this week at all.

Crows in the air

Last one, I swear, because this must be boring the shit out of you all (Or boiling your piss, or both).

Current draft of a letter to Local Pool saying “Oi! Equality Act!”, already reviewed once by the lovely CSL, but posted up here so that the rest of you can have a crack at improving it too. I’m worried it’s so long that the Policymakers’ eyes will glaze over;

Dear People That Make Policy,

I am a long-time customer of Local Public Baths, and on Friday 16th Oct (2015) noticed a new sign in the female changing rooms instructing patrons to “Change and shower as discreetly as possible when school-age children were present”. Due to the timings of swimming club sessions and the lack of dedicated adult swims, there are nearly always school-age children in the changing rooms, and there is no way to guarantee their absence for the full duration of changing, as even if they are not present initially they may suddenly arrive.

After asking a member of staff to clarify, I was told that “discreet” in this context meant that patrons were no longer allowed to take off their swimming kit in the shower in order to wash properly, or to change their clothes next to their lockers (Instead, to use the cubicles provided). I currently change on the bench by the lockers, as I am unable to carry my bag, shoes, towel, poolside medication and water from the cubicles to the lockers whilst walking with a crutch, and because my disability gives me very poor balance and coordination along with regular injuries and fast-onsetting fatigue, making changing in a small, locked cubicle with no handrails extremely difficult and possibly dangerous.

After telling him that this worried me, for the above reasons, I was told that I could either arrive fifteen minutes late to sessions (to make it more likely that I was the only person in the changing room whilst I changed) or to use the disabled changing rooms across the corridor.

To a lesser, but not inconsiderable extent, I am worried about the effect that not properly washing after a swim would have, as due to the fatigue which is an inherent part of joint hypermobility syndrome I am usually unable to shower again after getting home. The same, presumably, applies to the many elderly customers who also use the changing room showers as showers.

On the 25th of October, I phoned the centre to ask about the provision of disabled changing, and was informed that the disabled changing room has no lockers, meaning that disabled customers must change and shower in the disabled changing room, walk through the (usually cold) external corridor into the main, non-accessible changing room to use a locker, then either attempt the step-up and step-down through the main shower onto the poolside, or go back out into the cold external corridor and through another door to reach the pool. Each of these routes involves opening two to three heavy, non-power-assisted doors, even more times than an abled person would be required to open them in order to reach the poolside. I also do not believe it would be possible for a customer in a wheelchair to negotiate through the tight right-angled corner into the non-accessible changing room.

Upon visiting the centre on the 25th of October, I attended the evening swim and used the disabled changing room, and found it to be completely unsuitable for anyone with mobility issues – There is a provision of only two grab rails, the shower does not produce hot water, there are no coat or bag hooks or fixed benches, and walking down the outer corridor (much further than the distance needed to use the non-accessible changing rooms) in wet swimming kit, with my possessions in one hand, leaning on a crutch and with bare feet was incredibly taxing due to the cold, not to mention the problem of dragging mud into the pool on the way in. It was only with the help of a member of staff that I managed to get through the changing room doors on the way in to the pool, as I had to carry my coat, bag, boots, poolside equipment, towel and locker token in one hand, whilst using the crutch in my other hand, and thus could not open the door.

I am concerned that this new policy of “discreet” changing will disproportionately affect elderly and disabled swimmers, as the people most likely to both wash at the pool and to change by their lockers.

Please could you review this new policy – Either clarifying “discretion” to acknowledge the necessity of washing and changing safely for many disabled or elderly customers, providing accessible changing which meets BS8300 standards as set out by Sport England (preferably with access directly to the poolside), or by timetabling regular adult-only swims with suitable buffers to ensure that all children have left the changing rooms with adequate time for patrons to change before the start of their session. Any other reasonable accommodations would be appreciated, and I would be happy to consult with you on the issue of disabled access.

Yours faithfully,

Percy T. Dugong

A two-day sleep

It turns out that what I really needed was enforced rest.

I don’t know how to describe this without sounding terrible, but my best friend is a lot like a big, intelligent cat. The day before yesterday he turned up at my house with, in lieu of an actual dead mouse, an enormous bag of instant food (Cous cous that just needs hot water to be a meal, vegan naan bread, home-made curry that I just had to reheat, coconut biscuits) six cans of expensive fizzy pop that I adore, a half-bag of clothes that I’d left at his house over the past few months and that were now washed and pressed, and a fresh bottle of white port for us to share.

So we sat up until about four in the morning, eating food that didn’t take any effort to make, drinking port, and just generally chatting about nothing.

The day after, I basically slept like a crocodile – waking up a little bit to eat, talk, and do minor internet things, but mostly just drifting in and out of consciousness and letting various medications do their good work.

This morning, I was suddenly more useful again. Phoned the council to get the flashing light turned off (eight weeks and counting, no wonder I’ve been having migraines…) phoned the hospital to get my coil appointment sorted out (Now booked for the 17th of April), took Dog to the vets to have his nails clipped, bought and used some smell-destroyer stuff for the bit of the floor that Dog always pisses on when I leave him alone for ten seconds, and washed the bedding that I’d been living in for far too long by this point.

I was extremely pleased to note that sunset was at about 8pm today. We’re getting back to having a civilised amount of daylight.

After having done a pile of Stuff this afternoon, I had a brief nap this evening (about 9-11) and now I’m up again and basically ready to face the world. Admittedly, there’s not much world to face at 2am, but it’s a start.

A dugong in a badly-fitting human suit.

It’s a joke, but a pertinent one; That I am actually a dugong in an unconvincing, badly-fitting human suit, who gets closer and closer to discovery every day. Basically, my life goals revolve around swimming and eating a lot of seaweed. When asked to do things other than swim or eat a lot of seaweed, I get panicky and short-tempered and quickly fail.

Right now, I’m on the cusp of failing my degree, for about the fifth time. (Second year resits, second year part-time and quit, second year part-time with work, third year part-time resit and made redundant). That was all biology, or biomed, or animal physiology, or genetics. Life sciences, basically.

After getting my CELTA and living abroad for a year, I decided to go to the Open Uni and finish up my degree. So all I needed to do was a couple of second-year credits, and then my whole third year. I decided to do German, since I spoke German fairly well, and that went well; I got either Firsts or high 2.1s in every module, all the way up to 60 credits into third year, where I ran out of German to study.

This felt ridiculous.

And suddenly, I had to start another discipline, at 3rd-year level, without any of the prerequisites. I couldn’t do biology, since I wasn’t up-to-date enough (Five years away from the coal-face, and I could barely do my own molarity calculations, never mind telling someone how they related to determining the viability of bull semen) and I couldn’t do german, since there was not enough third-year credits available in german with the university (It was expected that anyone studying modern languages would study two, so the final year would be 60 credits of german and 60 of french, or similar). So I was stuck between a rock and a hard place.

I chose an English language module – I’d earnt my CELTA (Certificate in the English Language Teaching of Adults), after all, which was all about language handling, and it was the closest thing to degree-level knowledge of english that I had, other than a good A-level in english language and a lifetime of thinking really hard about my word choices.

So I started on it, and by Christmas I was lagging behind horrendously because of EDS, and the attendant fatigue, and having gone mental, again. I got deadlines extended, reassurance that I was going to be fine, plenty of hand-holding… And still, I’m behind.

Last week, I phoned the OU and said that I was going to drop out, and asked if I could just claim the non-honours, unclassified version of the degree.

Today, I got an email from the OU saying that they could offer to let me take the replacement module for the English course next year for free, and that I might want to do that, since a degree in no subjects, with no honours and no classification is basically no degree.

So, I’m back where I started – Part of me wants to just cash-in my credits and be done with it. I can’t get a degree-level job anyway, not with a five-year-long career gap and a collection of illnesses that make me a terminally shit employee, but part of me still views that as giving up, and that I should try again at least one more time. I don’t rally have the option of stopping now and starting up again in the future, since (thanks to the new tuition fees) I can’t afford it.

And I’m going to be fined by the Revenue for failing to fill out a tax return, even though I did fill it out, it was just their stupid website that didn’t acept it.

And I’ve lost £30 to a website which ripped me off on a Windows access code, and am having to talk to the fraud people about it.

I don’t know. My human suit doesn’t fit very well today.

The saga of this sodding bus pass

So, even though I’ve not been on a bus since June. I’ve been applying for a disabled bus pass, because it allows me to get a discount card which lets me get cheap access to council gyms and swimming baths. The idea is that this will make things cheaper.

To do so, I need some passport photos (Usually about a fiver) and a note from my doctor saying what’s wrong with me. Now, the doctors’ note is crucial in the application – It has to get across the fact that I can’t walk, and that I am basically really, really ill.

So I asked the people at RL to fill out the form for me. I handed it over, and waited a week.

Yesterday I rang back, and it had been filled out. And at this point, the receptionist said “Oh, you do know there’s a seventeen pound charge for that, don’t you?”

After the job had been done. When it became impossible for me to say “I don’t have seventeen pounds. Literally. At all. I’m waiting on a pay packet and it’s probably not even going to BE seventeen pounds after it’s been through the rapacious hands of the currency converter.”

But anyway. I borrowed the money from a friend and went to the surgery to pick it up. And what had been written was this;


Twelve words. Twelve words which must have taken about thirty seconds to write. At a rate of £1.42 a word, or £2,040 an hour. Which doesn’t say “And thus basically can’t walk more than a hundred yards” which is the only part that’s important to the bus pass company.

Anyway. Need to go to the Post Office to get my photos done (A 300yd walk, which is going to take me about half an hour each way, since I’ll need to rest a few times). So obviously, I want to phone ahead and find out if the post office has a photo booth. And lo, it’s the only post office in the area that doesn’t have a local number, it goes straight to the Post Office’s switchboard – Where they’re not going to know if it’s got a bloody photo booth or not. So I might be making a half-mile round trip, and wasting most of my afternoon, for nothing.

And finally, have had to order a copy of my council tax bill becuase they need two forms of ID, and one of them has to be either a utility bill (I get mine electronically), a council tax bill (yearly, so not within the three-month bracket), or a rent book (I’m mortgaged). Which will take “A few days” to be dispatched.

And then it’s going to take about a fortnight to be processed, and then another ten days or so to arrive. So about a month to wait, really, from the day that I send it off.

Cost of this bus pass – Already up to £23 (and there’s no guarantee that it’ll get processed at all). Plus the £10 for the nondisabled discount card that I’ve already bought, and the £2 for the disabled discount card that I’m still going to have to buy, and that’s £35. For £3 off a swim, I have to do ten swims to make back the cost of the pass. So that’s about a month. Fuckssakes.

Being disabled is basically just a matter of the paperwork heaping up until it kills you.

Well, that was quick


I posted my PIP2 (“How your disability affects you”) form on about the 31st of August.


Got this today, saying that it’s been processed and that I can expect to get my assessment date within 12-16 weeks. So about four months. It rings wrong to me that their nurse or physiotherapist can see me for an hour, and overrule the professional opinion of a consultant rheumatologist who knows me pretty well, and the UK’s leading specialist in hypermobility who has also personally seen me, but ours is not to question why.


Now someone is going to have to read my 6,500-word essay on “Why I Am So Disappointing” and then give that to the assessor.


Come to think of it, I don’t know what the original letter is for, if they’re going to assess me themselves anyway. Maybe so that they can form a preconcieved picture of what I’ll be like before meeting me, and then be shocked when I don’t look or act like that. Or maybe just so that I’m particularly ground-down and woeful from having to ennumerate my flaws in print. Or, charitably, to give me crib notes for before I go along to the assessment.


Either way, it’s ATOS that have me, not Capita. So that’s… A thing.

Back to your regularly scheduled timewasting

Surgery somehow managed to be running three quarters of an hour late by 10.30. But I’ll let it slide since the locum GP (Dr V) was really good.


Long story short – I need to tell Rheumatology that the GP thinks that the wrist problem is carpal tunnel, and to get them to arrange the MRI.


On the other hand, I’ve handed my bus pass application in to the reception desk, and that should be back with me soon enough, and they’ve confirmed that my physio pack has arrived from UCLH and that I can get a photocopy of it by the end of the week.


There’s going to be another meeting of the EDS society later on this week. I can’t decide if I’m going.


Swimming yesterday was good, and now I am utterly wrecked. I ended up being coached one-to-one for the full session due to being the only person in the water. Which was ideal.

Well look at me go!

After pulling my thumb out of my arse and getting through to the council about getting a disability bus pass (A bit useless since I last got a bus on the 14th of June, but it WILL give me cheap access to the local pool) I also got a phone call from the Nurse Practitioner at RL. Firstly, they’ve not got the physio pack, so are going to chase up London for that, and secondly, the Pudsey physio can’t treat me, and they want to get Rheumatology to make a properly co-ordinated care plan for me, that covers physio, CBT, investigations and everything. This will probably also cover what I need prescribing, will get me the pre-advice for A+E for when I arrive, and will get me back on track for getting to Stanmore in about a year.


So effectively, currently the person who has the most grip on what’s going on and how it really affects me is my local Nurse Practitioner. She’s brilliant.


The remains of today are going to be spent rewriting my PIP form. Wish me luck.

The wreckage

Well, I’ve bit the bullet and applied for Personal Independence Payment.

I know it makes me a Bad Socialist to feel like a failure for having to rely on a state benefit, but I suppose that I always envisaged myself as one of the ones making the big contributions and keeping the NHS and the railways running, rather than being a net drain.

More on this saga of whiny woe when my PIP claim form comes in, and I have to write a long essay for Iain Duncan-Smith entitled “Why I Don’t Function Like A Normal Person”.

Life Admin

This was supposed to be a really straightforward post.

I was going to talk about my DSA meeting on Thursday, which was nice and straightforward, and has resulted in my getting an “ergonomic assessment” – in which someone comes to my house, builds a desk over my bed, and hopefully gives me some cushions. She also asked me if I could just move house to make life easier – That understandably went down like a lead balloon.

So today I dug into my pile of letters to do a bit of life-admin; I thought I had cleared them all out but, lo, there were the two letters I’d been waiting for, and one that if I’d missed would have been a disaster.

First up: Gynaecology. My appointment is on Monday at 11.30. No eating after 7.30, no taking public transport, bring a friend. General anaesthetic. Not so bad last time, though that was just dental, and the surgeon (Mr G) seems lovely, so my only worry is the practicality of getting there. Best friend and his housemate has volunteered to be on hand.

Second: Rheumatology at the hypermobility clinic in London. Moved from 28 August to 17 July at 8.30 in the morning. Both my best friend and my sister volunteered to help get me there on time and in one bit – Best friend’s family are Londoners, so I could stay with them and then commute in. Sister has volunteered to stay in student accommodation with me 200 yards from the clinic. Both very good options. And I need to decide soon. With Sis, I’d travel down on the 16th and back on the 17th by train, which would be exhausting but would be on a train. With my friend, I’d be driven to Lincolnshire on the 15th, then London on the 16th, spend the night of the 17th in London, then back to Lincolnshire, then home by the 19th. A long time off work, long time around new people, but a much safer way to travel, with less opportunities to hurt myself. And not requiring any long walks around London.

Third and final: The Ombudsman. I need to fill out a complaint form by the end of the week to get this sorted and continue keeping the pressure on Robin Lane.

Also, the chapter delivering my prescription on Thursday was incredibly patronising and assumed that I didn’t know what the prescription delivery service was. I was actually asking him why he had only delivered my MST, and not the rest of the script. The rest arrives on the ninth, same day as my homework is due.

Busy busy busy.