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.

A first in the history of life.

Rang the surgery at 11.30. They took 25 “rings” to answer, I asked for an appointment and was told there was one on Monday at 10.30. I said “Yes please!”, and somehow the receptionist went back into the spielf of “You’ll have to ring back tomorrow if you want an appointment…”


But I clung on “You’d just said there was one available on Monday though?”

“Yes, but if you want anything done sooner, you’ll hae to ring back tomorrow…” (Ignoring the reality that if I ring back tomorrow, I won’t be able to get through, etc)


So I have an appointment on Monday. A real GP appointment where I’m going to egt to a named doctor (Either Dr F again, or the Locum). I’ve not had a real GP appointment for so long that I’m giddy.

Unshocked, but zapped

My right hand got increasingly worse, leading to another 111 call, and a trip to LX.


LX were fantastic – Appointment was booked for 19.00, I arrived at 18.45 and was seen at 18.46, no exaggeration needed.


By 19.00 I was back in the car with my best friend’s mum, with a prescription for more diazepam in my hand and insctuctions to get an electromyography booked.


So that’s an MRI for the hip needed, and an electromyography for the hand. I’ve also been told to get my rheumatology appointment moved forward. The doctor was incredibly sweet and kept calling me “young lady”, but he did try to unscrew my head and pull one of my shoulders out of socket. He was very nice about it though, so you’ll note that I didn’t really mind.


It’s now up to the GP to not drop the ball. Going to phone them tomorrow morning (Today was a bank holiday) and get an appointment to get both the MRI and the EMG sorted.


Amusingly, it’s almost two years to the day since my first EMG for hand pain in the medial nerve, which at the time was put down to spending too much time at my desk. I didn’t have a desk at the time, but back then I could be cowed by a fairly lowly OT. Nowadays, I eat registrars for breakfast and pick my teeth with the bones of consultants. It might go better this time.

Back to normal. Oh well.

Phoned the GP at 8.40 this morning, to attempt to get an appointment to follow-up on my dislocated hip, and the new and mysterious pains in my hands. Of course, the only “appointment” available was a phone consultation on Wednesday, and since I needed to be physically examined (I’m not saying that eyes were needed, I’m saying that either sight or touch was needed) that wasn’t going to quite cut the mustard.


So off to the walk-in clinic I go, on one of the two days that they suggest is “least busy”. It was still a two and a half hour wait. I had a book with me (One of the Aubrey and Maturin adventures) btu I still couldn’t quite filter out the horrible things on the practice’s TV.


First, guidelines on “exercise”.


“Pushing a lawnmower or going for a brisk walk counts as moderate exercise. Sorry, but shopping and housework, whilst exciting, aren’t exercise”


Is it just me that can’t see why a half-hour walk IS exercise, but a half-hour walk whilst looking in shop windows and weaving between aisles of food isn’t? Likewise, why pushing a lawnmower is exercise, but a trolley filled with bottles of lemonade isn’t? The only difference I can see is “Shopping and housework are feminised, gardening and walking aren’t”.


Second, the “Don’t just rush to A+E” song. Go and watch it, I’ll be right here.


– It directs “Broken bones” to the walk-in clinic (What the hell is a walk-in clinic going to do with a compound fracture?) and worse than that says “You can hop to a walk-in”. Yes, that’s exactly the level of compassion shown to people with leg injuries. I’ve phoned up with a dislocated hip before and been told “You can get a bus”.

– The main character is clearly coded as a young working-class woman (Short pink dress, blonde hair, fake tan, fake nails, whereas the doctors and other patients were all either male or middle-class coded) and the reasons she went to A+E were all very femme-coded (Fake tan went wrong, nail got stuck, cat got ill, had thrush). It pretty well perpetuates the stereotype of “Stupid chav women getting all hysterical” and adds to the chances that young women are going to be treated badly at accidenta and emergency if they have a problem that’s not “A heart attack, a stroke, burns or major bleeding” (The exact list of reasons for going to A+E that are approved of in the video).

– The video doesn’t mention 111 at all, which is pretty much the best/first place to go. They do a good job of directing basically everyone to either A+E, their local doctor, or sending an out-of-hours doctor to the house. 111 will send ambulances for all sorts of things not covered by the video, including mental health crises, which brings me on to my next point;

– For a lot of people having episodes of acute mental ill-health (Suicidal ideation, psychosis, urges to self harm, delirium, etc) A+E is the best possible place to be. This terrible video completely excludes them from their long and exhaustive list of conditions and where to go with them.

– Similar applies to unusual or complex symptoms of long-term conditions. Or indeed any acknowledgment of long-term conditions at all.


But anyway.


After two hours of this, a quick fifteen-minute detour to get a cup of tea and fifteen minutes’ more waiting, I got my appointment – Upstairs, with the nurse practitioner. Someone who couldn’t prescribe and couldn’t diagnose.


On the other hand, she was great. She was really sympathetic (Although amazed that I was here about the pain in my hands, and not trying to get a follow-up on the dislocated hip which put me in hospital last week) and got me referred back to physio – This time, with the local team instead of the hospital team at CA. She couldn’t get me the much-needed MRI for my hip, but I’ll phone up and see if I can get a phone consultation to get that.


A bit inefficient, but it’s a start.



Probably a slightly confused post here; I’m writing this whilst curled up in bed around my dislocated hip (Well, just sore and inflamed now, but it was dislocated and it really, really hurts) and having Weird Feelings.


I’ve been invited to go on holiday again with Best Friend – Just two days, to go and muck about on the boat with his family. And it hits enough anxieties that I just can’t go.


1 – I don’t like how much “supervised socialising” I end up doing. I know that nobody else has as guarded a relationship with their family as I do, but I’m pretty well conditioned to be on high-alert around my own family, and thus am always on a slightly-lesser alert with other people’s. BFF and his Mum have a really equal relationship, which means that sometimes he’ll snap at her, and she’ll snap back, and I just cower for a few minutes because I know that had that been me and my Mum, I would be punished for months for speaking to her like that. As such it both worries me that I might get dragged into a massive row, makes me feel like I’m about to get shouted at for being nearby, and then reminds me that no, my upbringing wasn’t normal. Being an adult who can’t quite socialise with older adults because I associate socialising with older adults with “Being told off afterwards for not behaving myself” is a bit crippling.


2 – This ties into the fact that I need looking after a bit now. Being carsick, falling asleep from exhaustion, needing to stop the car to fix bad joints, not being able to carry bags or cook dinner is the epitome of “not behaving myself”. Giving one-word-answers to questions, then rambling and making inappropriate jokes is also definitely “not behaving myself” and is probably also “showing off”. Having to stop people in the middle of a sentence to get my medication and fix something that’s dislocated – especially if I make a noise of pain in the process – is very definitely “showing off” and is the most exasperating thing ever. Especially around someone who is really ill and is just dealing with it without making such a stupid song-and-dance about it.


3 – As is probably pretty fucking predictable, I thus overcompensate. I try to hold off the medication for as long as possible, or to be really careful about what I say, or to help even when I can’t. And thus I cause problems, I end up breaking myself physically, or I get completely tongue-tied and say nothing. And end up having really weird days.


4 – The day(s) afterwards, I thus either hurt (in which case I was stupid to have gone out and tried) and end up complaining about it to BFF (making a song-and-dance) or I don’t hurt (and thus shouldn’t have made such a song-and-dance the day previously). These nice people who invite me to things shouldn’t have to put up with that.


5 – Thus I shouldn’t go to things.


So yesterday turned into an accident and emergency day.


Right hip jammed and tore at about 11.00, phoned 111 at 13.00, had a paramedic standing over my bed and administering IV morphine by 14.00, picked up for transport to the LGI by 16.30, checked in by 16.45, saw a doctor by 19.30 and was home by 20.00.


Honestly, just being kept warm, on a soft bed, and under supervision was probably all I needed. Both the consultant and the first paramedic confirmed the dislocated hip, and have expedited my rheumatology referral. This was the kind of A+E visit which reminds me why I have faith in the NHS – Everyone was professional and understanding, and genuinely listened and respected that I knew as much about my condition as they did, and tried to find sensible solutions.


This does, however, mean that I have to make an appointment with the GP, a task which is basically impossible. And I need to get back to complaining about them to the Ombudsman.


There’s something very wrong with a world in which a disabled person;

-Is scared to go to their GP, becuase the receptionists will stop them from getting an appointment and verbally abuse them, and one in three GPs at the surgery is actively hateful

-Is scared to call an ambulance, because the paramedics in the past have told them off for not keeping their house clean and insinuated that they mistreat their dog

-Is scared of A+E, due to having been manhandled by rude and dismissive consultants to the point of injury

-Is scared of getting more physio, due to the remaining physiotherapists at the local service being distinctly unsympathetic to anyone with a long-term condition

-Is scared of phoning 111 at all, after the time that they were put through to a nurse who berated them for being depressed and told them that they weren’t ill enough to be sad.


It’s not exactly looking good for my local services, right now.


On the other hand, the NHS has the most comfy blankets I have ever encountered.

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”.

Proxies and quantifiers

On Friday I got the phone call that my prescription would be ready on Monday, and that I could just go and pick it up then. As usual, this triggered the monthly round-up of my medication (What’ve I got lost down the back of a cushion? What’s going to need rationing out?) and I thought that I’d managed to use the full 400ml of morphine this month (After having had my dosage increased from 300ml a month to 400ml a month). I was heartbroken – I thought that I’d reduced my consumption. This, you understand, isn’t a goal in its own right (I don’t feel like I should reduce my morphine consumption for some kind of moral reason) I just use morphine consumption as a proxy for how much pain I’ve been in. So a high-morphine month is a bad thing because it means that I’ve been in a lot of pain.


The idea behind increasing my monthly dose was that, given more morphine to use, I wouldn’t have to ration it so tightly, thus would take it sooner and end up in less pain. I thought that all that had happened was that I’d taken more morphine and been in as much pain.


This morning, I found my entire month’s supply of morphine under my workbench. I’d managed to stretch the previous month’s 400ml to cover two months, just via the expedient of being able to take it on-demand without worrying.


In that month, I’ve got swimming so much more often, I’ve gone for a couple of long walks, and I’ve actually made it to work (Admittedly, not much, but a little bit). All because I haven’t tried to put off taking my much-needed medication.


Parables in action.