Tuesday, 10 August 2010


This afternoon I was treated to a truly wonderous display of the way the NHS works when it really does work. As a dance of various components of our medical system, it wasn't a fine ballet, but there was a rythm and a beat and I wouldn't mind watching it again.

3:30: I go in to see my general practitioner. I explain that I am in pain, all the time, that my body doesn't do what it should, that my bits don't stay where they are put. I tell him I'm exhausted, all the time. After an initial confusion wherein he thinks I've already seen a specialist for this problem (no, I had an x-ray for a suspected broken foot in April) he makes an appointment for me with a rheumatologist for a day and time that suits me, as soon as the waiting list allows. When asked about pain, he asks how I've been treating it, then prescribes me stronger painkillers. When asked about the exhaustion, he says he doesnt think it's connected, and gives me an 'order form' for blood tests. I leave his office with a half-smile, clutching three very precious bits of paper. I don't pay a thing.

3:50: I enter the pharmacy, and hand over the prescription. I ask if I'm still entitled to free prescriptions on the grounds that I'm on benefits and low income. I'm told yes, I am. Ten minutes later, I leave with 60 co-dydramol tablets, enough for between 7 and 30 days, depending on how much pain I'm in. I don't pay a thing.

4:10: I walk into my local hospital's phlebotomy department.

4:25: I am called through into a room where a polite man in a clean uniform smiles at me, takes my order form, and within a minute, has gently inserted a needle into my arm, extracted enough vials of blood for the tests, applied a cotton swab and taped me up. I thank him, and he wishes me a good day. I don't pay a thing.

By 4:35 I am back in my car headed home, having experienced one of the most iffecient interactions I've ever had with our medical service. The most wonderful thing, for me? All of this, the initial appointment, the blood tests, the referral, an the appointment with the specialist, when it comes, as well as my rescription, was completely 'fre', in that no one asked me for any money, and I didn't have a moment of sitting there debating with my doctor as to whether I could afford the care I needed. That's not a factor. Whether or not I can afford to live pain-free existance doesn't come into it. Yes, I will 'pay' or these services in taxes, in the £200 a month the government skims off my husbands paycheck, but when I need them, I don't have to check my bank account before heading into the pharmacy or the hospital. My major worries as they're drawing my blood? Fainting, not my overdraft.

There is the small matter that the wait to see a rheumatologist is a frankly shocking 58 days in my local hospital, and a not much better 32 days at a further hospital which is the soonest we could get an appointment. But the thing is, I'll be able to see someone, and I'll be able to do it for free, and I'll be able to get answers that if I had to pay for my care I may not be able to afford.

In the mean-time? I have painkillers. The painkillers do, admittedly, kill the pain. I got to be pain-free for the first time in months tonight and it was exciting. When they wore off, a little shiver of panic and a whimper of grief scuttled through my body. However, they also make me dizzy, and extremely nauseated. I had to lie down for four hours until they wore off, because sitting up, standing, walking, everything made me want to vomit or fall over. That was on a 2-pill dose, though. I've now taken a 1-pill dose in the hope that that will kill the pain without killing my nervous system.

In other news, I looked up 'rheumatologist' in an effort to understand what I was getting myself into, and subsequently convinced myself I have Lupus. Yeah. Maybe I should rename this blog 'The Hypochondria Star'.


  1. Thank god for pain restbits (however brief). I had one about 3 weeks ago for a couple of hours and it was like hot damn I can DO stuff!

    Man, I'm so glad that you get this and that you appreciate it's there. The first rhematologist I saw tested me for Fibro and lupus before EDS. The fibro was a lot of poking and I think the lupus was a blood test. EDS was a fairly easy one (it consisted a lot of "can you do this? dang yes yes you can! Can I take a photo of your hand for a medical article I'm writing")

    I've spend many a day and/or night crying to Chris or my dad. When my dad (god forbid) dies, I am 100% screwed unless C and I get married. I can't see a doctor, I can't get a prescription and I'm straight up afraid to get a diagnosis. Right now the only way I can get insurance is if I pay 380 (and up) per month and nothing (not a doctor visit or pill) is covered until I've meet the deductible (5000+). There is a really slim (but I am clinging to it so hard) that C and I can register as domestic partners when his company changes and be covered that way. I'm hoping, he's hoping and we are all holding our breath. /random tangent

    I hope you get to see the doc soon - Do you think they'll go for some physical therapy as well as meds etc?


  2. My appointment is for mid-September, so not soon, but within sight. Close enough to be excited about. They might refer to physical therapy once I have a diagnosis but that will be another waiting list and it also may not be available in my area. It also may be very hard for us to fit PT appointments around our schedule. Unless it falls on Mike's days off, we have no childcare.

    See, that's why I don't GET why so many Americans are so against socialised healthcare. Sure it's a little slower than privatised, and sure you may not always get EXACTLY the most amazing ad wonderful treatment, but you're never going to lose your house because someone hits you with their car. A baby won't cost you £250K. Your entire life won't be ruled by whether or not you can afford to see a doctor. Lets face it, sick and disabled people, the ones who need healthcare the most, are least able to afford it under the American system, whereas here, they are buffeted and protected. If you are low income, pregnant, just had a baby or suffer a life-long condition, you will never pay for medication. Any medication. I will never have to weigh up the cost of an A&E visit before calling an ambulance. If I need a heart transplant but don't have a job, tht's just not a factor. How is socialised helthcare NOT a good thing??

  3. Hello... Good luck at the rheumatologists appointment. I hope he/she has a working knowledge of EDS. I don't really understand why the gp thinks exhaustion is not related to the condition though. It does irritate me somewhat when they earn quite a bit but don't do a little background reading on a suspected condition. I know they are very busy people but they are intelligent & it takes two minutes to gen up so to speak. Apart from that unrelenting pain is exhausting so why he should separate the pain from the exhaustion I don't know. Many people with EDS have been labelled as hysterics & hypochondriacs & worse that makes me cross. Please don't worry about being a hypochondriac EDS mimics many conditions & also chronic conditions have overlap symptoms which are hard to differentiate. I hope the rheumatologist, gives you answers & realistic help. If not able to do so I hope he refers you to a specialist in EDS. Sadly these days UCHL in London in the hypermobility clinic is one of the few available. Its not rocket science though a good rheumatologist should be able to get their head round it.

    46 now I take a combination of meds that would make your head spin. Allergic to nsaids. To name but a few... Lyrica, dihydrocodeine MR, on occassion oramorph, diazepam. Aledronic Acid once a week. Calceous. bla bla! Co-dydramol, makes me feel sick also and constipated. You could give the practice a ring and ask for anti-nausea stuff.
    My body went into freefall 20 years ago now after the birth of first child its hard to put into practice pain management strategies with the demands of little one's. Babies don't understand pacing or realistic goals much.

    I don't understand the American ethos on healthcare. A country that claims to be so great should be ashamed. I have had harsh treatment from some medical professionals in my time but not once have I had to pay to be seen. Our system is not without its faults but you are so right, we are lucky so lucky. I also cannot imagine how stressful life would be if I had to pay pay pay. I expect thats why this country has a lot of health tourism taking advantage of our system!

    I hope tomorrow is a pain free day. Here's hoping.

  4. I suspect my GP is actually a little simple. I also told him I was very worried about my weight. Without weighing me or asking what I weighed he said as long as I wasn't throwing up or starving myself I was fine, it was probably just my metabolism. Yeah. Apparently at almost 5'7 I just NATURALLY weigh 6.5st. Idiot. Bless him, he knows better than to try and send me away without any action, but I get the impression he's just phoning it in some days.

    It was having a baby that set me off as well. I'd always been flexible, but it had never hurt before, and a joint had never undone itself without my say-so. After about 5-6 months of being pregnant suddenly I couldnt do anything. I also REALLY feel you on the babies-don't-get-it front. She doesn't understand 'Mommy can't move right now' or 'Mommy is really really tired and needs to lie down for a few hours'. It was especially hard when she was younger and had medical problems. There were times when between my problems and her problems, I thought I'd lose my mind.

    I can't imagine being on that many pills! I think that luckily my condition is, thus far, fairly mild- whatever it is. Right now if I take one pill every 3-4 hours I seem to be ok. Except waking up. Waking up SUCKS.