Less tangent, more suet.

So the last few weeks have been stressful. Starts with the psycho costume furore, goes on the the Samaritans’ Radar, via a massive bout of self-harm, a long hard look at whether surviving that suicide attempt in September was a good thing (Jury is currently out), a massive wobble in which I’ve been hiding from my best friend, and reopening my complaint against RLMP with the health ombudsman, after that paramedic’s phone call got me a phone call from a doctor who said… Wait for it… “Phone back tomorrow morning and book an appointment, this doesn’t sound urgent”. My issue was “All of my muscles are in spasm, I’ve run out of diazepam, my mental health has gone through ‘fragile’ into ‘nonexistent’, I’ve not slept for more than three hours at a stretch since early October and not had a night without exhausting nightmares since the 15th, and my whole life is ruled by pain, exhaustion and trying to avoid really permanently damaging myself”.

So, at 5.30pm on the 30th, after I’d smashed a few glasses and opened a few veins, I walked off into the rain and registered at a new GP. Who gave me an appointment for yesterday, the 3rd. I waited less than a week. I asked for the appointment at about 6mp, and not only did they have appointments left, but they could also book me in for a follow-up in a month if it was going to be needed, and a new-patient-appointment with a nurse on the 11th.

At the appointment, I repeated the complaint above. And I got a pretty decent response. My new GP, Dr AC, seems a bit worried about addiction (“I’m worried about prescribing you diazepam, since it’s addictive” rather than “I’m worried about prescribing you diazepam, since it gets less effective over time etc”) and can’t tell the difference between non-prescription and herbal medicine (Diphenydramine isn’t herbal. Not herbal at all) but she’s noted my mental ill-health, respects that I don’t need anything right now, and has carried forward all of my old scripts. Plus, she looks a lot like my best friend from sixth form, and graduated from my old University (Where I also worked in the medical school!) and that gets my vote.

And now, apparently, I’m crawling back into insomnia again. Welcome to autumn.

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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;

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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.

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.

And so, we wait.

My speech to text programme is basically saving my life right now, since without it I’d not be able to communicate at all.

 

I spent yesterday in bed, slipping in and out of conciousness (80mg of morphine, 6mg diazepam), incapable of function thanks to the sedating effect of the analgesics and the antispasmodics, but still in pain. Eventually a friend came over and picked me up, relocated my hips and shoulders, then my partner came home and fed me and spent the rest of the night looking after me.

 

Currently watching a programme about mobility scooters, and they’ve just mentioned “palliative care”. A woman in her sixties, saying that it feels wrong that she’s only recieving palliative care, and that that means she’s got nothing to look forward too. Another is in her thrities, more like me, vey depressed by her condition, but desperate to keep trying. I’m recieving palliative care too – the best they can do is keep me comfortable. Getting better is all down to luck, and remembering to do my exercises, and not getting too despondent. There’s an older chap as well, and he basically regains some indepenence by getting his mobility scooter, and that makes me kind of happy- That there IS something that can be done, sometimes.

 

Anyway, tonight (I’d nearly forgotten) is a meeting of the EDS society. If I go, it’ll be my first one. I’m currently a bit terrified to go, but on the other hand, it’ll be good for me. Probably. I don’t really know. I’ll report back, anyway.

 

Tomorrow is my Open University German tutorial as well, 9am at the local polytechnic. My tutor knows that I might not make it, but she’s agreed to send me the handouts and do an online tutorial for me if I can’t.

 

For now, I have homework to do.

 

Oh, and a bit of good news as well;

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Just a reply saying “We’ve got your complaint and we’re going to look into it” but it’s a start.

 

The good, the bad, the medium, and a massive exploration of my weirder anxieties, apparently.

Actually, this is a several-part blog post.

 

The medium;

I’ve now had grab rails installed on the stairs and in the bathroom, which is good, but does make the house look a bit like a care home, and have been back to OT to get an epicondylar clasp made – Basically a pair of pads which grip my forearm in such a way that they prevent the muscles pulling too hard on the attachments at the elbow, thus giving the tendons time to become less inflamed. I have to wear it constantly for three weeks, and it’s already giving me a rash after a day and a bit.

 

The bad;

 

Yep, I was supposed to be at iaido this morning, but my partner started off unwilling to drive me (It’s a club we both go to, about fifty miles away – He was going to go without me) since “I might just fall to bits”. This is kind of one of those arguments that can go around in circles forever; I know that about half the time, I’ll end up hurting myself at iaido, and about a quarter of the times that I hurt myself I won’t be able to finish the session. Since Sensei knows what’s wrong with me he doesn’t mind, and I honestly think that risking a minor injury that’ll slow me down for a day, in order to continue with my sport (The last point-of-continuity with my life Before) is a risk worth taking. The trouble is, I feel that after the insurance concerns have been worked out, it’s really my business to decide whether or not I’m capable of doing something and whether or not the risks are worth it. I’m not having a manic episode, I’m generally known for having a realistic grasp of my own limitations, and flat-out arbitrating someone else’s activity levels is a bit too infantilising for my tastes. I can’t just “Wait until I’m better” because I’m about as good as I’m going to get right now, and I really don’t want to just spend the rest of my life slowly withering down to nothing, trapped in the house, when I know that I could be out doing the things that make me happy. I know that he’s concerned for my health, and that he’s not got some sinister intent, but I just wish that he’d either trust me when I say that I’m well enough to train (And I am actually feeling really fit today, more’s the pity) or have a proper conversation about why he desn’t think I’m fit enough to train. There’s also, of course, that nagging feeling from years of bad conditioning of “He just doesn’t want to be seen with a cripple, an embarrassing cripple who can’t do anything right, who stands out as being a failure, who everyone pities, who reflects badly on him because they’re whiny and weak…” And I know he’d never mean that, because he’s not like that – He does just genuinely worry about me – but in this instance he’s expressing it in a cackhanded way that keeps hurting me.

 

I don’t know what to do about it, but at the moment, as much as giving up iaido is going to hurt, it’ll probably hurt less than the feeling that I get every time he says that I shouldn’t go.

 

Anyway, lovely SummoningEsther has linked me this list of local EDS support groups, which is a relief, since there’s one much closer to home than the nearest meeting of the general Hypermobility Syndromes Association. I’m not sure if I want to go – I have weird issues about feeling not ill enough to need a support group, plus I’m really shit with new people and tend to be incapable of reigning in my unpopular opinions (to the degree that the shape of my nose is a testament to my character). They might be an appropriate place to find people who’ve had similar troubles, and honestly might just be somewhere where I can find new people to socialise with that take life at a similar pace to what I do. Despite my best efforts, I feel both intensely lonely right now and terribly scared of meeting new people; My best friend is getting a new housemate this month, and I’m mentally preparing myself for just not seeing him in-person much anymore, because the thought of being visible to a new person, in a context where I’m not able to directly manage the lens through which they see me, scares the hell out of me. I don’t want to stop seeing him, I don’t want to become even more of a recluse, but I know how my mind works and I know that it’ll just be too frightening to visit him, so I’ll make up excuses and stop visiting until I’m just no longer thought about. I can deal with people online – They see my writing first, so even if I’m writing about illness I’m able to present it in a way that I choose, and if they see me on webcam I’m able to manage my setup so that what they see is someone reclining in comfort, who can immediately switch it off and have privacy if anything medical happens, and can socialise for tiny amounts of time in-between bouts of morphine-induced confusion, so people don’t see them helpless, or anything less than droll and intelligent. It’s like a hyper-magnified version of most people’s online attempts to make themselves more appealing, but stretching out to the point that I just don’t socialise in the real world.

 

Going down this road – I know that people don’t genuinely only spend time with me because I’m the only person available or convenient, but it was hammered into me when I was quite young that I was basically an ersatz-person, only good enough to be around until the real interesting people turned up, only a good enough craftsperson to build stopgaps or things which were “good, for free”, only intelligent enough to ask for advice when all other resources had been exhausted. I, for obvious reasons, took refuge in my body. I might not be the brightest, or the nicest, or the most interesting, or the most talented, but I could be the fittest, the strongest, the tireless; The one able to carry the person with the broken leg back to the youth hostel, to walk the ten miles in the snow to get food and chaperone people home safely, that didn’t need to be good at conversations because people either started them with me by saying “Christ, you look fit”, and then tolerated me leeching the minor socialisation that I needed because I was a useful body to keep around, or didn’t come near me at all because of the nagging impression that I might just punch them. The one that could find joy in swimming against the tide in the north sea, because there was guaranteed to be nobody around to make them feel ashamed of themselves for not being a real person. And losing that physical presence, I feel like I’ve lost everything. Why would anyone want to talk to me, when I’ve done nothing of note for months and can barely hold up my end of a conversation? Why would anyone want to commission me to build something, when I can’t even guarantee that I’ll be able to buy in materials or move my hands? Why would anyone want to fuck me, when it’d be so much easier to fuck someone who was whole? I live in terror of everyone that I know realising that their lives would be simpler if they didn’t keep me around (Yes, even the people who are ill as well, and possibly even more so – Their lives are already complicated, why would they want to complicate them further?) and just quietly phasing me out of their affections.

 

Today, incidentally, is not being a good day.

 

A tiny spot of good news though; My MP has forwarded my complaint about RL to the Parliamentary and Health Service Ombudsman. And another link from SummoningEsther; A survey on healthcare, for people with rare chronic illnesses that have difficulty accessing treatment.

 

I think I’m going to go back to sleep. I’m in no state to work, and can’t deal with people right now.

This is the sound of a frayed nerve snapping.

So, back on the 20th of May, I sent this in an email to my MP to complain about my medical practise fucking me around in circles and generally making my condition worse;

 

Most recently; On Sunday morning, I was forced to call the out-of-hours doctor (Dr S–) to my house, as I had a dislocated hip (One of the messier symptoms of joint hypermobility syndrome). He told me to get an appointment with Dr Z– as soon as possible on Monday; Specifically Dr Z–, since he is the GP at the surgery who is most familiar with me and my condition, and continuity of care is really important in the case of chronic illness. Dr S– also told that if my condition deteriorated of I couldn’t see the doctor, I should go straight to A+E. 

I decided that I’d rather try to stick it out and phone the GP in the morning, so spent the evening in the care of a friend, being kept comfortable as bes as could be done. Knowiing that my GP’s practise is often impossible to get an appointment with, I phoned them at exactly 8am – The phone was engaged. I continued to redail them repeatedly (Checking my phone log, literally twenty times) until finally connecting to the surgery at 8.04, at which point I was told that all appointments had been claimed, and that I should try phoning back on Wednesday to get an appointment with Dr Z– on Thursday (Wherein I’d have the same “chance” of getting an appointment as I had that morning). I begged the receptionist, R–, to release an appointment early, since I had a disolcated hip and instructions from Dr S–, and would otherwise need emergency treatment, and he was unmoved. 

As such, I had to spend most of yesterday in A+E, just because it’s impossible to book appointments with my GP. 

And that’s only the most recent issue with them; Since 2012, it’s been more likely that I’ll be told to “Phone back tomorrow” than to be given an appointment. Due to my condition, which comes with disturbed sleep and difficulty waking in the mornings, I usually can’t guarantee being awake at 8.00 to make the phone call. I’ve explained this to the reception staff, and have been told to just “Set an alarm clock” (Which sort of suggests that she doesn’t understand what disordered sleep is actually like). I’m self-employed, and if I force myself to be awake at 8am, I usually miss the day’s work due to the sheer fatigue and usually pain that this ends up causing. And, of course, since only a few appointments are released, I sometimes have to phone three or four days in a row, meaning missing a week of work and leaving me with not enough money to live on. This system also ruins any chance of continuity of care, as you simply have to take an appointment with whichever GP is available; And in a ten-minute appointment, if I have to explain the overview of my entire condition (Which is unusual enough that many doctors just won’t have encountered it before) there’s little time left to explain whatever the current problem is. 

A few more examples, to illustrate that it’s not only this week which has been a problem; In February I was unable to get an appointment to review my medication after having ran out early. As a result I was left in extreme pain, and had to phone 111, wherein my condition was considered to be so serious by the phone responder that a team of paramedics were sent to my house. Likewise, in January I needed an appointment at relatively short notice, to treat constipation brought on as a side-effect to necessary medication. I was unable to get a routine appointment for over a week, resulting in needing to use the “Emergency walk-in clinic” at Robin Lane; If I had been seen sooner, there wouldn’t have been an emergency. This feels like a waste of NHS money, and frankly like unnecessary cruelty.
 
The receptionists claim that instead of going to regular appointments, I should just use the walk-in clinic which R– L— runs in the mornings; In this, you arrive before 12 and then have to sit for usually around an hour or two before being seen for 10 minutes by a randomly assigned doctor. Firstly, it’s inappropriate for a long-term condition, as what the chronically ill generally need is regular, non-urgent appointments, and the surgery’s own guidelines say that the walk-in service isn’t for things like medication reviews or assessment of ongoing conditions. In addition to this, sitting for an hour or two in a non-adapted chair (At home, due to the pain in my back, hips and shoulders, I never sit upright, always either sitting cross-legged on the floor, or reclining) causes more pain and damage, and can result in needing several days to recover. I have tried sitting on the floor or lying down when the walk-in surgery is less busy, but have always been told off my the receptionists as lying down “Didn’t look very nice, for the other people”, and thus was forced to sit upright and cause myself further pain. 

As you can see, it’s bad enough for me, and probably even worse for either people with conditions which require carer-assistance to get to appointments, or for people who are employed by companies instead of being self-employed, as they’ll need to try to book time off for appointments. 

I’m very curious as to whether their organisation has performed an impact assessment, as outlined by the Disability Discrimination Act (2005), and if so what the results of that were.

I genuinely don’t know what to do – The majority of GPs at the practice are extremely good, and the surgery is extremely close to my house, and thus I’m unwilling to go to another practise, but the receptionists and appointment-booking scheme are making it impossible to get an adequate quality of care.

 

And he forwarded it to my GP’s practise, with the intent of Getting Something Done about the whole situation.

 

So, today, I’ve just got this in response;

 

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Which I can’t help but thinking reads like nothing more than an excessively verbose “Fuck you”.

 

I am angry. I am in pain, I am sad, I am utterly hopeless, and administrators are really deliberately missing the point.