Invisible

In the last week or so, I've had to face up to the reality of being told that I, a medical student, an intelligent, stubborn, arsey young woman, am disabled. I'm not disabled in a stereotypical way. I'm not in a wheelchair, or deaf or blind. I don't have a walking stick or a guide dog. I have a complex medical condition. It affects my mobility in a way that most people can't see. It affects my vision in an undetectable (to most people) way. I can't walk far, or do things that are seen as normal. I can't easily cook myself a meal from scratch any more. I can't often read my textbooks with much ease. I can't write my own name or get out of bed some days. But I look almost completely normal. I have an invisible disabilty. I'm treated the same as everyone else because they can't see what's wrong. Some days, I love this. On days like today when I'm in excruciating pain and quite frankly want to hide under my duvet and cry, all I want is a shoulder to cry on and an offer of small help, but because it's invisible, so am I.

Dear Father Christmas

Dear Father Christmas,

I've tried to be good this year. I've made some new friends, attempted to make peace with some I fell out with, and made an effort to keep in touch with old friends along the way. I've looked after my grandad when he's been ill, I carried out the promises I made to him and visited my grandma and passed my exams. I've tried to be nice to my sisters, even they've made me want to tear my hair out, and I've helped my mother when she's asked for it. I've worked hard and got the marks I've deserved, and I'm finally accepting my health problems.

So, in return, please may I have:

• Some extra spoons - they'll be needed in the New Year
• Some help with this awful Student Finance screw up
• A couple of friends at University - being alone is so hard sometimes
• Some extra space in my brain for all the stuff I need to know
• New ways of learning things that works for me and sticks - I'm struggling
• And some acceptance from friends, colleagues, the medical school and my family of my illness and of me as a person.

Thank you for reading this, whether you can fulfil it or not.

Truffle

xx

Still Here

I'm still alive, I have lost a chunk of my sight, and am being sent for all manner of investigations into my eyes, joints, skin and heart, including seeing a geneticist, so everything's a bit crazy. I'm also on a clinical placement at the moment so learning lots in a very short space of time with long days, all whilst trying to maintain a social life and enter dance competitions that I'm probably not well enough to do. Tough times but I'm still here and still keeping going. Normal blogging will resume soon! I'm still on twitter and still check my emails regularly - let me know if you have any ideas for things you want me to blog about, or if you just want to get to know me better

Back soon!

Truffle

xx

What do you see?

After my last post, I had comments on twitter saying that I was insulting people whose eyesight really was failing as I can obviously manage to do clinical skills with no problem, and that if I couldn't I'd be a danger to my patients. I was a little hurt by these comments, because until you've experienced what it's like to have sight like mine, it's difficult to appreciate the challenges I face with it.

I manage to do clinical skills fine because I adapt as I learn the new skills and find a way to do them that works for me. As a child I learned to hold a pencil different to other children because I couldn't coordinate the pencil well enough to write the "normal" way. My handwriting was still dreadful but it worked for me. If you learn a new skill, you don't necessarily do it exactly the way it was taught - you make adaptations that work for you, and that applies to everyone, whether you have difficulties with sight, hearing, understanding, mobility, etc or not. Most of what I described in my last post are things I don't actually think about from day to day any more, because they're completely normal for me. It's just when I move house and change environments, particularly to somewhere I don't know, that I have to think and adapt what I do. I've recently moved to live on campus and I've already learned that I need to adapt to the new surroundings. Already today I've burned myself on the grill twice because it's high up on the wall and the grill tray comes out at an angle that's difficult for me to see. I've walked into walls because the corridors are narrower than I'm used to at home. It's frustrating, but in another week or so there won't be those problems any more because I'll have adapted and they'll become normal adaptations which require little or no thought.

A perfect example of problems in new situations was whilst out with a friend today. We were in one of those gadget type shops with lots of electronic toys that run around and fly etc. One of the shop assistants was flying a miniature helicopter. It was black with a blue light on it but because of the speed it was moving and the colour and size it was, I just didn't see it and nearly walked into it head on. A toy like that can do a surprising amount of damage to a person's face, it will at least sting for an hour or so if the blades catch you - trust me on that one! I didn't see it mainly because it was on my left hand side. If I'd have been somewhere I'd known to take extra care, I'd have been looking left more often by swapping control of my eyes and forcing my brain to use my left eye - just like I do when I'm driving. Small adaptations that just make me and other people safer.

Essentially what I'm saying is, I don't claim to be anything i'm not. I just make do with what I have. I'm grateful for the sight I do have and want to protect and preserve that for as long as possible. I'm not trying to make out things are worse than they are, I'm not trying to get pity or sympathy. I don't want that. I just want a little understanding, because outwardly, i just look like a clumsy twit. I look "normal". I conform to society. If you look at a photograph of me, you can't tell there's anything wrong. You might pick up that I have a squint (I hate that word by the way. I squint when I look at the sun. So does everyone! It doesn't mean my eye looks like it does - that's amblyopia if you want to call it something medical, or a lazy eye if you don't). I don't make a big thing of it. I don't like drawing attention to it - people comment on it enough as it is without me pointing it out! But if people ask why I do something differently then I explain. Just because outwardly everything seems fine, doesn't mean that I'm not struggling.

So, my question to you, what do you see when you look at me? Do you see a girl who is quite frankly struggling, or do you see the outwardly bubbly "normal" person, or do you see a moany whingey whiney person? Yeah I complain about it from time to time, but wouldn't you? I'm only human after all.

Getting Left Behind and Vanishing...

It's been a little over a month since I last blogged, and it's not been the best of months which is why I've not been blogging, although I'm still around on twitter. My grandad's been really ill and has been in and out of hospital and generally a big worry for me. My sisters got A level and GCSE results. No idea how my sister's A levels went and I don't dare ask but my baby sister did fantastically in her GCSEs so I'm really proud of her. I've come back to university for a couple of weeks because I've had some clinical placement hours to make up from when I was ill and things were strained at home because my mum's been so stressed.

It's generally been quite lonely because my friends I had at home have all moved on and the few friends I have at university have been home for the summer. I kind of feel like everyone is moving on and leaving me behind. I'm still the same shy, insecure person I was when I was at school. I'm still permanently doubting myself and my abilities, and it feels like life is passing me by and that I'm missing out on things that should be normal for someone my age, like going out with friends and just actually enjoying university life.

I also feel like i'm being left behind in terms of the blogging world too. I used to have a really fab blog but now, it seems like it's pointless. I have little motivation to write because I get little back from this blog now. The number of comments have dwindled and I just don't think it's worth the effort any more. It seems more successful and popular blogs have more popular people behind them and they're streaks ahead of me. Let's face it, who wants to read this when you can read blogs by people like Mark Glencorse and Stuart Gray? I guess I'm just going to have to decide whether I want to even blog any more, because quite frankly, it just doesn't seem worth it, and too many people keep trying to shoot me down and stop me blogging.

1 sheep, 2 sheep, 3 sheep....

It seems I've become an insomniac. I haven't slept properly since last Tuesday. I'm currently surviving on 1-3 hours a night. 3 is good. Very good. It's making me feel horrific, I'm having horrible dreams, it's not doing me any favours healthwise (I have apparently some strange viral infection that is playing games with my heart rate and making me feel generally rather bizarre.). I want to go running, in the hope that it'll burn me out, but I can't risk it with my lungs being as rubbish as they are. All I want is sleep and I just can't get it. Any ideas for things to help? Sleeping tablets aren't working (prescribed ones. I have two types and neither seem to be doing anything.) neither are hot baths, lavender oil, milky drinks. Suggestions needed!! I need some sleep! I have an exam on Monday and my stress levels are even higher cos I'm not sleeping.

Love you Grandad Jack

My grandad died very suddenly at lunchtime on Tuesday. Safe to say I am a total mess.

Love you Grandad Jack.

Send Your Thoughts Please

Having a tough time at the moment. Failed an assignment and am not at all enjoying placement. Just would be nice if people could just send me a comment to let me know they're there. Aside from finally having Simon back, I'm feeling really quite alone.

What are we supposed to do?

As medical students, sometimes we encounter situations we are not at all expecting, and that we struggle to deal with because it's not something we've yet covered in our training. We then don't get the opportunity to later discuss how best we should have dealt with the situation, so when it comes to the next time around (which inevitably, there WILL be a next time) we have very little idea what we should do, what we're supposed to do. Thing is, I just can't work out how to change this. It needs to change. We can't be left feeling like this every time we encounter situations like this.

Ideas on a postcard please.

Alternatively you can email me or DM me.

Future HEMS Doctor?

When I joined Twitter, I started out as MedStudentFaye. That's me, that's who I am and what I am. Plain and simple. I soon realised thought, that I wasn't happy just being me. I wanted to aim higher. I wasn't happy just being mediocre or average. So, I became FutureHEMSDoc, in order to give myself something to aim for. However, this year, I've been doubting myself. A LOT. I haven't been at all happy at UEA, that's no secret. The course isn't really right for me and I haven't made many real friends at all on my course, or even at UEA in general. I feel isolated and alone a lot of the time, despite having a wonderful boyfriend (NorfolkDocToBe) but he's usually up in Manchester, but at the moment he's the other side of the world. I love him to pieces but him being so far away is currently very unhelpful! I don't at all begrudge him the opportunity he has in Australia, and am really pleased he's enjoying himself and travelling and learning a bit more about himself and what he wants to do as he advances in his medical career. He's made for medicine. I'm not so sure that I am.

I've had several lengthy discussions with many of my good friends on twitter about all of this - mostly Mark Glencorse and his lovely wife Sandra, as well as iMedicFF (who has put up with me crying far too much!) who have been fantastic in helping me decide what is best for me, and what I should do. (Thank you guys! Really appreciate all the lengthy conversations - I know I'm a pain in the butt, but you've helped me out a hell of a lot). But in the end, no matter how much I discuss this with people, it is MY decision. I changed my twitter name so there was no pressure on myself to be FutureHEMSDoc, but at the end of the day, I wouldn't be me if I didn't push myself. For now, I'm going to work as hard as I can at this medical degree, because I'm not one for giving up. If I pass the year, I'll carry on and work until I get to where I want to be. I'm not particularly bright, and I'm not popular or happy on this degree, but once I'm qualified, I can do so much with it, and I just can't waste that opportunity. I've got this far, and I couldn't forgive myself if I threw that away. If I fail the year, at least I gave it a go and did my best, but I'll then go and be a paramedic. I'd be happy in that job, I know I would. I love every single aspect of it, even the paperwork and the picking up drunks on a Saturday night, but I think I'd always feel like I lost the opportunity to do more. I'm not at all putting down paramedics and what they do - the VAST majority of those that I've met have been fantastic people, highly skilled and far better than I would ever be at that job, but as a doctor, I could do many more different things, and maybe even change the way a few things work for the better.

As I said in my first post, I'm stubborn, opinionated and I care a hell of a lot. Because of that I'm going to do my best whatever I do. I'm going to keep going out observing with paramedics as much as possible (if you're a paramedic or tech who wants an observer, give me a shout!! I'd love to go out with as many different people as possible). I'm going to keep working as an HCA in my hospital, and I'm going to speak to ambulance services about student paramedic jobs, and look into paramedic science degrees, because I'm still a little unsure.

I'm crying as I write this, not because I think I'm making the wrong decision, but because I think, for now, I'm making the right one for me, even if the world seems to be passing me by because of it, and because I've put a lot of people through my crying and worrying and stressing over all of this.

To everyone who has helped me with this decision, including those who I haven't mentioned by name: Thank You. You don't know how much help and support you've been. Honestly, you don't.

To everyone who has put me down and told me I can't do this, and told me to quit and that I'm useless and  a waste of space, and that I'll be a rubbish doctor: I'm going to prove you wrong. You may put me down, and say awful things to me, but it's just making me stronger. I'm going to FIGHT until I have nothing left.And I'm going to do what's right for ME.

PBL - A Problem Best Left

She stands in the shower, the warm water dripping down her face. At least now, nobody can see that she's crying. She gets out of the shower, shivers as her feet hit the cold tiles. She wraps herself in her towel and sits on the edge of the bath. As she looks down at her scarred legs she feels that deep lonely ache in the pit of her stomach. She hastily pulls on her clothes and leaves the bathroom. She scrabbles around for her books and pens and throws them in a bag. She turns on her hairdryer to drown out the noise of the students talking noisily and happily in the street. She picks up her bag, pulls on her boots and walks out of the door. Today is just going to be the same. She gets to her seminar group 5 minutes early. She gets out her notes and takes her seat, saying nothing but a polite hello. There's no point saying anything else any more. She feels unappreciated and disliked by the group. As the discussion begins, she is frequently talked over and ignored, and even put down by other members of the group. This isn't what this should be like. This should be enjoyable, and sociable, but instead, she gives in and sits in silence. She sits, and just hopes that soon it will end. She leaves, only to go to her lecture, and sit and cry silent tears, hoping that nobody can see.

This is my attempt at trying to express what PBL days are like for me this year. It's a constant struggled with my group and I dread the days. My tutor has been fantastic, and a great help and support, but I just don't feel valued, and I don't feel like my presence is even noticed. I guess, this is just the way it's going to be.

Stress City

OSCE tomorrow afternoon. Logbooks not finished. Stressing. The FEAR has well and truly set in. I'm incredibly tired and ill and lonely. The boyfriend is so far away and I just want to crawl in a hole and hide. Would be grateful if you'd send comments willing me on to get this work done. Need all the help and support I can get at the moment.

An Invitation

As I'm really busy at the moment with possibly life changing decisions to make, revision to do, still feeling ill, and putting up with my family, I'd like to invite somebody else to write a post for me. Would like it to be about an experience as a patient, a medical student during your training or a paramedicine student during your training, or someone in a medical career coming across something particularly interesting.

Submissions to dysdiadochokinesia@hotmail.com by midnight (UK time) tonight preferably for the first post, and midnight Thursday for the second post of the week.

Look forward to reading them!

Thank You

I wanted to say thank you for all your thoughts, comments and prayers, and kind messages that you have sent me. They are all playing a part in my decision making, and I'd be grateful if you'd keep them coming and spread the word for me. I really appreciate your kind words, and they're all helping me on my way to reaching a decision. I think I'm nearly there, but I just need those last few bits of help and reassurance to keep me on the right track for me.


Thank you, all you kind people, and thank you social media.

Faye
xxx

Hardest Decision

So, I'm a week on, and nothing much has changed. I'm home for Easter and hating it. Family life is difficult and I don't fit back in anymore. To top it off, the boyfriend is in Australia so I can't even talk to him all that much because of the time difference (Time zones suck!!). I'm quite lonely here and all I want to do is sleep.


I'm having a real rethink about my life at the moment. I'm not really happy in medical school and I really don't know if it's the right thing for me. I always wanted to be a paramedic, but my school refused to send off the UCAS form with Paramedic Science on it, or write me a reference for a student paramedic position. My parents refused to support me in that career, and I knew that nursing and midwifery weren't for me, so I decided to just go for it and apply for medicine. I didn't think I'd get offers, let alone get the grades, but I did, even if it was by the skin of my teeth. 


Since then I've been struggling with everything at medical school, aside from the practical things. The science is way beyond what I can cope with without doing stupid amounts of work. I no longer have a social life and the stress is having an impact on my health. I love the practical stuff, and fast paced patient turnaround, but other than that, there is very little keeping me here. I haven't made many friends, I don't go out or even dance anymore (I used to be a dancer on the university Dancesport team) and I just don't see a reason why to carry on. I keep scraping through exams other than the practical ones and I'm just not enjoying much of it at all.


I'm thinking about leaving it all and going to be a paramedic. It's what I wanted to do in the first place and I think it's really where my heart's at but I just don't know. My parents would hate me for it, I don't think my boyfriend would really be all too happy about it and I just don't know. I can't decide. I've agonised over it, shed plenty of tears and lost a lot of sleep over it. It's a very difficult decision but one I will have to make soon enough.

It's A Strange World

Those of you who follow me on Twitter will know that I've recently spent 9 days in hospital. It was an interesting experience to say the least. It was very up and down and incredibly emotional. I cried a lot, I got angry a lot, and I learned who my friends are really and truly. Being ill enough to be in hospital teaches you a lot.


It's a very strange experience being a patient in your own hospital. On the first two wards I was on, I knew the majority of the staff, and even managed to have a catch up with a few of them, but suffice to say, it was very odd not being in control of anything. Even through the pain, I wanted to answer ringing call bells.  I wanted to help the other patients who  looked more ill than me. I wanted to help everyone, and be the one to answer the call bells instead of being the one pressing my buzzer. I got a real taste of how horrible and scary and disorientating and confusing and just how strange it is being a patient. This is something I'm going to remember in future. I don't think I could ever fully appreciate what it was like in the hospital as a patient before now.


Throughout the whole time, my best friend and my boyfriend (The Manchester Medic) were both very supportive. They even made my birthday fun, despite me being in hospital and in pain, and feeling generally terrible. I felt like a fraud to begin with, because everyone else just looked so much more ill than I thought I did. It was only on the second night did I realise how ill I actually was. I'd fought this illness for a month before admitting defeat and letting myself be admitted to hospital. Medical Students are well known for the phenomenon that is "Medstudentitis". We all think we have every disease we study. Something that comes from having too much knowledge I guess. Except, I'd refused to admit that I really was ill. I kept saying I was fine until the point where I just had to give in.


I learned a lot from being a patient, and this is something I'm going to share over the next few days and weeks.


And for those of you wondering about my health - I'm still in pain, I'm still exhausted and I'm still ill. Nobody knows what's wrong but it's definitely not an infection or anything urological. If you want to play guess the diagnosis, email me and I'll give you a run down of my history and symptoms. Would be interesting to know what differentials people come up with!! Let me know by leaving your differential diagnoses in the comments of this post.

Little Blip and Nightmares

Apologies for my little blip last week. I still feel like crap, but normal blogging has now returned. (But related to that, I would love if you would let me know that you're reading, either via Twitter or a comment or email. Anything really! Would love feedback on the blog, and requests for things you want me to post about).


As those of you who have been reading the blog back will know, I have a really keen interest in Emergency Medicine. I love anything adrenaline fuelled and fast paced, and I even love treating the minor injuries and drunks etc in A&E (although I much prefer "real" medicine, I love it all!). This means that a lot of the cardiovascular medicine I'm studying at the moment is of great interest to me. I enjoyed my defibrillator training, teaching on arrhythmias and ECGs, teaching on MIs, teaching on AAAs. All of it I find really interesting, and geared towards the medicine I like and want as a future career. So, why am I having recurrent nightmares about being involved in my first cardiac arrest?


I've seen cardiac arrests before, but not been actively involved other than fetching and carrying. I've seen my first in hospital death, and yes it affected me, and I was upset by it, but it's the nature of this job that people will die sometimes. We all have to die eventually. What I don't understand is why I keep waking up from this nightmare panicking, and why throughout the dream I am absolutely petrified.


The nightmare starts with me following a consultant on a ward round. We go to a patient behind a curtain, and find them unconscious. Then begins the resuscitation protocol. I know exactly what happens, I've seen it before, I've been trained to deal with it. Yet, in the nightmare, when the consultant asks me to start compressions and to then start the defibrillation protocols, I freeze and panic, and see the patient slipping away before me. I get pushed out of the way, see a failing resuscitation attempt before me, hear in the distance the consultant ask if everyone agrees to stop and call the time of death. This is the point where I wake up. I wake up panicking and breathing far too quickly, and absolutely petrified.


I couldn't do anything, I couldn't move, I couldn't get myself to do what I've been trained to. I doubt in real life it'll be like this, because often, when I'm stressed then that intrinsic knowledge kicks in and I move and do what needs doing. I don't understand why I'm having these nightmares, because it shouldn't happen like that, and the likelihood is that, as a medical student,  probably won't be involved in an active resuscitation attempt for some time. But yet, that niggle is always at the back of my mind every time I'm in the hospital. I don't know why, and I hope this nightmare will go because I'm exhausted from waking up every night at least once. I guess I'll just have to beat this panic out of my subconscious.


As a weird aside, according to my housemate, I've been sleep talking. Mostly having conversations with my boyfriend apparently. Maybe this is all my stress? It's creepy, that's for sure!! Just hope I don't start sleepwalking!

Disappearing Act

Apologies for disappearances of posts and of myself from the blogosphere for the last two weeks. I've had a few problems with a few things. Mostly it's been friends, ex-friends, moving house, sick housemates, sick pussacat, placement and my own ill health causing problems. Just about everything really.


In the mean time, I've been sleeping, hunting for houses/flats for next year, in and out of A&E, Doctors surgeries and hospitals (Probable kidney stones. Joy.). I've been working stupidly hard on my project on cardiac physiology. I'm writing a report, and planning and creating a presentation (for the record, I really really really hate MS PowerPoint. I hate looking at them, I hate making them, I hate them full stop.) and it's taking up a lot of my time right now.


On top of all that I've been coping with horrible renal colic, resulting in me being given lots of painkillers and a referral to the urology clinic. I've also been dealing with my mental health. I have an appointment for CBT booked, I've had my antidepressant dose upped and some of my regular medications changed. Just now it seems my brain runs at 100 miles an hour and my body can't cope. I am hyper for a couple of days and then I crash out and get more depressed and sleep loads and cry and have a bit of a crisis over whether I want to be at Medical School still or not. Quite frankly, right now, I don't know what I want.


I'm really struggling academically this term and I don't know why. I absolutely love cardiology, and I find it fascinating and highly interesting but I'm finding it really hard to get my head around the science. I guess I'm just not up to this right now with everything that I've got going on. I need to know how best to make me learn this and I can't work out how. 


And to top it all off, on top of me feeling stupidly thick all the time at medical school, my housemate has just come in and made me feel about a centimetre tall. I want to help, really I do but I can't do anything. Right now, I feel completely useless no matter where I am or who I'm with.