Thursday 24 November 2011


I was talking to the lovely Bendy Girl on twitter earlier about the number of diagnoses I fielded before finally discovering that my childhood (and adulthood) flexibendyparty tricks had everything to do with the joint pain, fainting, fatigue, nausea, IBS, panic attacks etc that I had taken to the doctor at one time or the other.

It's quite common for bendy folk to have a whole ream of diagnostic 'horses' tried on for size before anyone suggests the 'zebra' that sticks.*

Our conversation got me to thinking of all the different things I've been diagnosed with or tested for over the years.

- depression (my main pre-bendy diagnosis at the grand old age of 13 - in retrospect a lot to do with fatigue and overworking combined with a good helping of fuckedupchildhood - I don't doubt that I was depressed at various points but I think that it was secondary to chronic pain and fatigue which I didn't understand or know how to express)

- hypothyroidism (my psychiatrist was so convinced that my depression/fatigue had a physical basis that when my thyroid levels came back normal I was sent for a thyroid stimlation test, and put on thyroxine for several years under the care of an endocrinologist)

- anaemia (again, psychiatrist was convinced there was a physical cause - I wish she had trusted hereself more)

- SAD (my mother was convinced that it was lack of sunlight causing depression - in retrospect probably a combination of weather-worsened bendy problems and the most stressful/busy period of the year for me school wise)

- BPD (I was a young woman who self-harmed, go figure.)

- CFS/ME (I had fatigue and I wasn't anaemic)

- bulimia (gastric stasis plus mental health issues, apparently quite a common issue in adolescent bendies)

- leukaemia (fatigue plus constant, un-fading, unexplainable bruises)

- being overweight (true, but used to explain joint pain, reflux/gastritis and asthma when I'm not hugely overweight)

- B12 deficiency (as above)

- schizoaffective disorder (turns out barely sleeping for several months - as in 2-3 hours per night maximum - will do funny things to your brain)

- swooning (not in so many words, but my GP's explanation for my up to 10 times a day fainting is that 'young women faint')

- rheumatoid arthritis (young woman with severe joint pain)

- fibromyalgia (the rheumy I saw thought that my fatigue and pain must be a sign of fibro, despite diagnosing me as bendy, showing just how little she knows about EDS)

- vaso-vagal syncope (this diagnosis is still standing - it's pretty much Latin for 'you faint', and as such is a prime example of doctors putting the presenting complaint into poshmedicwords and offering that as an explanation)

- somatisation disorder (posh medic for "it's all in your head" - not to be confused with "you're making it up", the idea being that it's a physical expression of mental distress - often confused with "you're making it up" and therefore frequent accusations of this are made with no referral to psychiatric services for treatment of what is an actual disorder)

- Factitious disorder ("you're making it up" not to be confused with somatisation disorder - I apparently get my kicks out of hanging out in NHS waiting rooms, taking 20 pills a day, being too ill to carry on with uni, needing my partner to shower me - well, ok, that one's not all bad - drinking pints of salt water, using a wheelchair, losing consciouness in public, slurring my words and seeming drunk, subluxating and dislocating my own joints, etc.

As each differential was disproven, I was more and more treated like I was faking, and less and less like a human being. Noone referred me for psychological help to deal with a serious somatisation or factitious disorder. Even though I have a diagnosis now, as my GP knows so little about EDS, I go through the same shit every time I need to discuss a new symptom - I have a genetic disorder that affects pretty much every system in my body, but my GP can only just get his head around the fact that it affects my joints.

Maybe it will help you to understand if I tell you that I put off going to the GP for months when I had the awful bruises that led him to seriously consider that I had leukaemia (bruising as it turns out is just another EDS quirk), because I felt so awfult that I could well believe that I was dying. That looks awfully melodramatic written down, but it is what it is.

Every failed test (yes, what should have been good news, felt like a failure) was just more evidence to myself that I was making this up, that everyone gets tired, everyone gets sore, and it was only me who was too lazy lazylazylazy to get to the end of the day without crying. When everyone tells you that you are lying when you tell them you don't feel well, that there's nothing wrong with you, that you're lazy if you get the bus into uni instead of walking, you take that message into the core of you.

You know that I didn't realise that I'd had joint pain for years until I went to my friend's house one day and the air was thick with weed, and the pain went away? I had been told there was nothing wrong with me so often that I couldn't even work out what pain felt like.

Finally realising that not everyone felt this way every day, finally finding out about EDS and talking to people who'd had the same experiences as me, that was life-changing. I could finally listen to my body and believe what it was telling me. If I'd been diagnosed at 13 when I first started to be significantly disabled by EDS, things would be very different for me now.

I understand that the collection of symptoms - pain, fatigue, IBS, headaches, fainting - could all be explained by depression. I understand that they are all associated with "heart sink" "worried well" patients. I understand that doctors don't get it right all the time. But when you are told for years that you are lying, how are you supposed to trust yourself? I don't know if I'll ever not feel like I've been let-down by these doctors and the system they work in.

When you work through a differential, first you check for the fatal things, and then the common things. If you don't find either, you don't just stop looking. You start looking for the stuff that's less common. I want to tattoo on the arm of every medical student and doctor "sometimes it's zebras".

*as the old medical adage goes : when you hear hoofbeats, think horses not zebras.


I've started to learn to drive.

Not a particularly big deal, something that most adults in the UK seem to do and take for granted, but it's a big deal to me. I didn't learn at 17 when my friends did for many reasons - environmental, health, time, terror and lack of need living as I did in an area with amazing public transport provision.

Things have changed though - I'm now a 23 year-old who can't walk without pain and can't wheel herself on cambered pavement (pretty much all pavement) for any distance, who spends money she doesn't have on buses for distances most could walk, or taxis for places that are too far to walk/wheel from the bus stop. This includes most hospitals, even some of those which have a bus stop in the grounds. That's not to mention that getting a bus as a wheelie generally means leaving 3 buses before the one you need to get to get there on time to allow for inaccessible vehicles, broken ramps/bad backs/drivers not stopping - annoying but do-able for routes that run every 10 minutes, but impractical when it would mean leaving the house 3 hours before a 9am ward round.

So I'm learning to drive. In an automatic, because my shoulders/elbows/wrists would give before the gear stick. Luckily my parents are paying (a belated 17th birthday present) because it's anything from £3-5 pounds more expensive per hour to learn.

I thought it would be a disaster. My lack of proprioception makes me ridiculously clumsy, and when I panic I curl up in a ball and put my hands over my ears - not the most useful of defence mechanisms.

But it's going ok. I've had 2 lessons, and the 2nd I was driving for 40 minutes out of the hour, tackling traffic lights, mini roundabouts, turning corners and other bits and pieces. My instructor is lovely - endearingly eccentric - and very encouraging. And I'm really, really enjoying it. Unexpectedly. By the end of today's lesson, my self-confidence which has taken such a knocking again of late was practically singing a little song.

There's a lot more to learn, and then there's decisions to be made over a car, and working out who gets the car when because the mrs is hoping to work in places that need a car to get to so that she's not essentially penalised for staying here with me when all the local hospitals are crap and horribly unsupportive places to start work.

But for now I'm smiling at the memories of the lovely little noise the indicator makes when it clicks off after you turn a corner, and turning on the windscreen wipers, and the way putting the hand brake on at traffic lights makes me feel really grown up.

There's something really soothing about pootling along the road at 25 miles per hour and taking your part in the little dance that is a mini roundabout.

I'm sure I'll get bored of it soon, or come up against all the stressful bits, but for now it's nice, and I feel really good about it.

Tuesday 22 November 2011

Tiny losses, tiny let-downs

I find making new friends and meeting new colleagues quite tricky. Partly I think because I'm an introvert, and most people aren't, so it takes a lot of energy for me to do sociable-type things like going to lunch with the whole gang every day rather than curling up in a quiet corner with a book.

I also don't feel like I have a lot in common with other students - my life looks very different in significant ways like disability, or longtermlivein relationship, or queerness - but it's generally the seemingly less significant bits that actually make me feel like an alien - being vegan, doing activism, being Christian but not the kind of Christian the majority of Christian students seem to be. And things that shouldn't matter, but still hurt, like everyone else taking the shortcut to the canteen down the back stairs while I have to go round via the lift, with a merry "see you there". Lunch with a group of people I don't know is my idea of hell. I end up feeling weird, feeling 'other', feeling inferior and fatlazystupidhorrible.

I have friends in medical school, close friends, friends I would eat lunch with every day, it's not that I'm a social outcast. It's just that when you're in a year group of 300, the chance of being placed with someone you're close to is slim. Even when you're in the same hospital as a friend, meeting for lunch is a challenge when each of you is at the whim of whichever consultant you're stalking that day.

A big consideration for me when I chose to intercalate (take a year away from med school to get a BSc) was that I would end up in a different year group. The way things worked out meant that most of my close friends (although not my best friend) intercalated, so I had plenty of familiar faces in the new year group, but it was still quite hard. Now I'm taking this year out, it will happen all over again, except without the scattering of familiar faces to make it easier.

I've come to realise that this is going to happen every year now, for at least the next ten. Working less than fulltime will mean that those I start the foundation programme with will finish in half the time, leaving me with a new batch, and the same will happen in specialist training.

In a lot of ways this doesn't worry me - I have friends and a support network that is not dependent on who I'm working with. I don't feel the urge to socialise a lot out of work with my colleagues in big groups - and I often can't manage the activities anyway - clubbing, late nights, lots of drinking don't go well with my wonky bod (although this is another part of introversion that people don't really understand and I don't think it helps me in terms of fitting in).

But I'm worried about constantly meeting new people (and along with that constantly fielding 'what's wrong with you?' or 'you don't eat cheese?' or 'so what does your partner do, is he a doctor?'). I'm worried about resenting friends who can chug through life at 'normal' place, or being told that I have no right to be stressed/tired during FY1 when I work less than fulltime or don't do certain shifts.

I was talking to the mrs about this yesterday. It's not easy to let myself work through all these little bits of conceptual sadness, these little losses of stuff that isn't yet. I feel so angry, so sad, so let down. I can't think about it, because if I let it overwhelm me, they'll be so much more to grieve for. I'm finding it hard to be at church at the moment, and I think that this is why. It's the only time in the week that I can't control the direction my mind wanders. That wouldn't be a bad thing - I want to work through this stuff, want to name it, to feel it, to put it aside or act on it as appropriate - but I don't get the whole way through the process. I just go to church, get upset/angry, and then come home feeling like shit. I don't know how to make it better. I know it's hard for the mrs that I don't go, but I can't face it. I don't want to keep going to church and leaving in tears.

And you know, I'm actually really happy. I have a beautiful mrs, and lovely family/friends, and a daft cat. There's just this bit of me that's hurting, that hurts more every time I have to fight with my GP to provide the healthcare I need, or listen to the med school's bullshit about why they can't make adaptations. Every time people's words and actions seem to scream that I'm a lazy, inconvenient liar who they wish would disappear.

Friday 4 November 2011

Make believe

I'm not even sure if this post makes any sense. It will at least manage to explain why it doesn't make much sense. I'm swimming through treacle.

From Monday I am going to start a thought experiment (check me out, I'm all Derren Brown-y!). I am going to pretend that I have a job and that my job is filling in my DLA form. I will try to spend my week in the way that I would advise someone else in my position to.

This might sound extreme, but the cold weather has brought with it a pain spike and consequent sleep buggeration, so some combination of pain/fatigue/brainfog is destroying my motivation and concentration.

When I'm talking to someone, or cuddling the cat, or curled up in bed listening to the radio, I'm all there. When I sit down to work on my DLA form or to address some of the other 1500 tasks on my to-do list I find myself drifting off into the middle distance and staring at the wall for hours. My head is so cotton-wooly that it's hard to get to the end of a complete thought.

It's not that I'm not getting anything done, just that everything takes hours longer than it should, that even small periods of concentration (like phoning the bank to ask for my customer number) seem to drain me to a ridiculous extent.

I think maybe getting out of the house to go somewhere else and work on the form would help, but I don't know where I could get to. My independent mobility is very limited at the moment, although hopefully the new chair will help. If I can get so I can easily take the bus on my own, then I can go to the library, which would be nice.

So, I'm going to make myself a timetable, set myself up to work in the study, and make a nice to-do list which is acheivable and has lots of small tasks to tick off. My timetable's not too ambitious, but it's a much more regular routine than I was managing before I was off. It's looking something like : up/dressed/breakfast by 10.30*, alternating tasks every half hour (or more frequently depending how shot my concentration is) until 1ish, lunch and internet messing around, 2-4 some more tasks from the to-do list, then a lie down, then dinner, then flop with a craft project for the evening.

I think by pretending I'm at work, therefore the deadlines I set myself are more concrete, that I might get a bit more done. This plus dividing each job into small tick-off-able tasks should help. I hope =/

*I have a bit of an issue about telling people when I get up. It makes me feel really lazy. Since I've had a few weeks of decent sleep I've been managing to get up by half 9, which is early for me to wake up naturally. It takes me a long time to get going even then - I have to follow a certain routine of meds and exercises to get near to awake. I hate mornings. Mornings hate me.

Tuesday 1 November 2011

Progress Report = Drunk Zombie

Tonight I am starting to get a bit worried about how I'm going to get everything done that I need to this year. It's 5 weeks since I left med school, and I'm still really struggling with energy/motivation/concentration/brainfog. I feel like I've wasted a month.

I'm scared of starting to drive, because it's a completely new skill and one I don't think will come particularly naturally. I haven't started to exercise, because my local council gym with a swimming pool is 15 minutes away from the nearest bus stop and I haven't figued out one that will be more accessible. The DLA form is really hard going and the local CAB-type place has a 6 week waiting list for helping to fill them in. I still haven't sorted out a plan of action with my GP, or even managed to get an appointment with a non-locum. I haven't agreed any adaptations with the medical school for next year. I feel a bit sick thinking about it all.

Not only is my brain calling me a fail because of the above lack of progress, but I also feel like I'm not entitled to feel stressed about how much there is to do when all my friends are getting ready for their finals / enduring junior doctor-ness. And I feel like crap because I'm not able to do stuff around the house (like laundry, washing up) for Beanie when she's so busy and I'm just sitting around the house all day. And then every few days I decide that I'm being lazy and it's all in my head so totally push the boundaries and then can't do anything for the next few days.

I'm trying so hard to be compassionate towards myself. I would never call someone else in my position lazy, or say that someone was useless if they couldn't work/help around the house.

I think I had this idea that without med school taking up time I could just replace that with working towards all these things that need done. I hadn't quite got my head around just how much my attendance had fallen off, how ill I was feeling every day, how exhausted I was. The difference I suppose is how I'm choosing to spend my energy, and also that I'm trying really hard not to go over my budget and thus end up in the bood/bust cycle that was breaking me.

I keep trying to remind myself that I have been doing stuff, that I am making progress, that it will be alright. I've been to two protests, organised and run a weekend event for the charity I'm a trustee of, visited my parents and friends, made a long train journey alone in the wheelchair, live tweeted the Lords committee stage of the Welfare Reform Bill, applied for a driving license, researched and started my DLA form, ordered the new wheelchair and done a lot of reading and craft. More importantly I've got into a routine with food, meds, self-managent and sleep. I can really feel the difference, but it takes a lot of time and motivation to keep on top of it all.

I told myself at the start of this whole thing that my priorities for this year were maximising my health (physical/mental/social/spiritual), applying for DLA and learning to drive. Put like that it doesn't sound so daunting. But tonight it also seems huge and unmanageable and scary. I need the energy/motivation/concentration to make a plan and stick to it, but even the idea of that is too much. I really feel like I need some help to manage it all, but I can't really think of any way to make that happen.

Seriously, if you could see me now, you would get the brainfog thing. I look/feel like a drunk zombie. I hope it'll lift a bit tomorrow now I've had a chance to rest after the weekend...