Hot Milky Hygiene

Dr L2 was really nice, believed me, trusted that my graphs were accurate… And gave me depressingly unhelpful advice. She also said there was no sleep clinic nearby who could take me.

The advice I’ve got – Start my “going to bed” regime earlier, about 10pm rather than near to midnight, and don’t read after that point. Make my bedroom be purely for sleeping in, not for anything else. She seemed to think that my exercise regime was doing me good, so to stick to that. And to stop taking nytol, which I would rather not be taking anyway. She also advised that I get up every morning at about 9am, as I have been doing anyway.

Let me point out what this means in reality.

This means coming home from my swim, and immediately turning off the lights and lying in the dark. With no chemical assistance to get to sleep. I’d shown her the graph which showed that, sans-nytol, I fall asleep about an hour or an hour or a half later every night, leading to occassionally going to bed in the early hours of the morning. This could mean lying still, in the dark, wide awake, until sunrise.

I am pretty sure that this will nuke my mental health, with nothing to do overnight but either ramble through my favourite daydreams (fun) or descend into one of my more usual depression-anxiety-horror spirals.

Well, it’s a month. I can do anything for a month. And this will make an even more interesting graph. Next appointment is on the 11th, also with Dr L2.

For the curious, here’s the whole first month’s graph:


Oh, and I got a Stanmore update – Dr R did nothing in February, other than to mark down that there’d been a fuckup, and Dr L2 reckoned that they wouldn’t be able to refer me out-of-area until they’d been to the funding committee, and made a case for why I personally deserved funding.

So, yeah, all of the time between July 2014 and now has been wasted. She’s promised to get someone to phone me back, soon, about progress with the funding committee.

I have been in pain, howling, life-wrecking, sanity-shredding pain, for the fourteen months since seeing the hypermobility clinic. In those fourteen months, I’ve become almost entirely housebound, and have only very recently started going out again for anything other than completely essential errands. Those fourteen months, in which I’d been clinging to hope by racing to the door every morning to see if my Stanmore admission had been confirmed, have just been wasted.

Fuck everything with a sharp stick.


13 thoughts on “Hot Milky Hygiene

  1. The funding issue sounds horribly familiar. A lovely friend with Body Dysmorphic Disorder went through months of deterioration while the bean-counters hashed up her referral for a long period of inpatient treatment in London. I thought she might not live to see her funding approved…but she did…she’s in treatment, and doing well. So don’t give up and it’s awful, but you have to aggressively progress chase out of area referrals yourself it seems, to actually get anywhere. It shouldn’t be like that…I mean you ARE ill for heaven’s sake.

    Re. long night hours, audio books & the World Service, R4 Extra, R5 really help me. It fills the horrible empty space in your head with something soothing and/or engaging – if you choose Alan Bennett reading Wind in the Willows, or as I am doing now, re-experiencing Jane Austen’s novels, read word for word. I don’t know if this option is do-able for you, or palatable either!

    Presume zopiclone ruled out?

    C xxx

    • I was told absolutely “no stimulation”, meaning no reading, no audiobooks, no radio, no nothing. Plus, I’d be sharing a bed with Dearest, so if I was doing anything I’d have to be quiet.

      I didn’t dare ask if I was allowed to do the other proverbial thing to do to kill time in bed, but the inference was that I wasn’t allowed that either.

      I’m glad that your friend got her treatment in the end – It gives me hope for us as well.

  2. WTAF?

    Did I read that correctly? NO referral made?

    Complaint time. Seriously.

    I’ve been rummaging on the Stanmore’s site to find out about commissioning, because certain national specialist services are commissioned nationally rather than locally, meaning there is no need to go through all the rigmarole of arguing with local commissioners about funding (cf my experiences of referring bairns to the Tavistock). However that sort of arcane info is not immediately apparent.

    It might be worth your while contacting the Stanmore and asking about how services are commissioned: if nationally you have no problem; if by local commissioners it could be a long haul.

  3. Oh and some use of a certain well-known search engine reveals that the sleep services in your county (not just your immediate trust) are pretty much all geared towards sleep apnoea and run through ENT or thoracic medicine departments…

    You appear to be out of luck locally…

    • Yep, assumed I’d be out of luck on sleep services, if nothing else because I’m not a priority patient – I don’t need to be dirunal for work, I don’t have apnoea so can’t use the local services, and I’m not cute and tragic enough for a GP to bend the rules and send me to the nearest sleep clinic on Teesside. Considering how well my other out-of-area referral is going.

  4. It might be worth re-hashing something I wrote on Inky’s blog a while back.

    For quite a few years now it has been SOP in the NHS that all patients are to be offered copies of all letters written about them, unless there are some mental capacity issues. This means that you must be asked if you do or don’t want copies of letters and that you should sign an appropriate form confirming your wishes, which is then kept as part of your medical records. You have the right to change your mind at any time.

    I have always strongly advised people to ask for copies, as it means you can keep your own record of what has happened and what should be happening (like referrals to Stanmore…) and you can, indeed should, question anything you are not happy with.

    You can ask to see your medical records and there has to be a fucking good and legally defensible reason to deny you access. In your current circumstances I would recommend that you seriously consider asking to see both your GP records and (?) rheumatology records to clarify who has fucked up and when.

    • If I just ring my GP and ask for an email containing a) Full GP record, b) Copies of all letters about me and c) Copies of my rheumatology record, do you reckon that would work?

      Kind of feel like all I want to do is crawl under the bed with a torch and a stack of books and not come out until I need fitting up for a coffin.

  5. Murmur is right about getting copies of letters – it should happen as a matter of course.

    But I think you have to go through a more formal process than that Percy to get hold of confidential medical records. And I doubt very much you’d get them by email.

    The memory clinic in Oxford which was treating mum for MCI bent the rules for me as her daughter/carer and emailed copies of letters from the hospital to her GP, to me, but I think that was them being pragmatic and exceptionally helpful.

    I know it is tiresome Percy but you either need to make a GP appt about this botch-up or write a formal letter or both. I suspect phone calls just ‘disappear’ into the NHS ether (maybe they are anaesthetised). If you contact PALS they may be able to take up the case on your behalf. I have used PALS once and they were very helpful. So if you phone anyone, phone PALS!

  6. Percy: what Cathy said about PALS. They exist to help in such circumstances.

    GP is unlikely to send any patient sensitive data by e-mail. We were forbidden from doing so unless it was to a “secure” (whatever that meant) address and password protected.

    There are formal processes: with GP ask practice manager; with rheumatology ring reception and ask what their process is.

    Or try to do everything via PALS.

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