6 weeks out of hospital

It's been 6 weeks since I was discharged from hospital, and so much has changed. Most days I can walk unassisted, with well controlled pain, for a good length of time. I wear patches on my back, take gabapentin religiously, and look like a normal 20-something woman with no spinal lesions to strangers who pass me.

I'm frequently going to the gym and I've got a new bike (some shitbag stole my old one!) and I'm tearing up the streets of Cambridge. I've started doing some short shifts at work which I'm finding tough, but it's a good step forward. The Brain and Spine Foundation are doing the 3 peaks challenge in May and I'm very tempted to join up...

Other days though - the days most people don't see - I'm still in a lot of pain and I can't do much except curl up and hope it stops soon. I thought Crohn's, pernicious anaemia and an epilepsy drug regime had taught me the true meanings of the words "fatigued" and "exhausted" but I was wrong. The lethargy I feel approximately 30% of the time is all consuming and stops me doing more than I think most people realise. Some days my legs don't want to work and start spasming. This happened once in a yoga class - I thought yoga would be a beneficial thing for my fairly broken body and mind. I put myself in the back corner of the room because I knew I'd struggle and hoped I'd go un-commented on, if not un-noticed. The instructor saw I was struggling and came over to help me - a nice gesture, but a humiliating one too. I explained to her that I've only recently learned to walk again and I was here to do some gentle stretching, not become a yoga expert, and hoped she'd leave me alone. Instead, she spent the rest of the class manipulating my painful and weak legs into positions, despite me clearly wanting her to turn her focus to the other 11 people and stop publicly highlighting my disabilities. She didn't, and I left that class feeling a bit useless.

Spending a long time in hospital and being pretty isolated from people has motivated me to spend lots of time with friends and family who I've been too busy to see recently. It's been lovely to catch up (and I've still got some visits to Leicester in the pipeline for when I'm able to do trains on my own) and it's given me a sense of connection again. Talking to people who I've not had a chance to see recently has also played a big part in my recovery. I worry it's more than a little narcissistic, but their encouragement and amazement at my progress makes me feel a lot better about myself, and motivates me to do more.

They're teaching me I don't have to be amazing - being me is good enough.

Love Emily x

Occupational Health

Since I've been diagnosed with epilepsy (19 months) Occupational Health have been the bane of my life. Months of placement at a time have been missed, arbitrary restrictions imposed causing deadlines to be missed, and obstacle after obstacle have made my pretty wary of the organisation. Therefore, I was incredibly nervous about my appointment yesterday.

But it went amazingly. Astonishingly, the doctor I saw has done research on transverse myelitis so she was very well informed about the condition and it's impacts. She also struggled to believe the progress I've made so far, but said she could see no reason why I can't start a phased return to work next week. I'll be doing 2 short shifts (I say short, it's NHS short - they're still 7.5 hours long!) a week for 3 weeks, then 1 short shift and 1 long shift (12.5 hours) for 3 weeks, then 2 long shifts for a week, and on week 8 I should be able to go back to 3 long shifts a week. That was the best possible outcome, and after 19 months of receiving the worst possible outcome from them I'm very shocked - but equally as pleased.

All I need to do now is get over this hospital fear...

Love Emily x

3 weeks out of hospital

It's been 3 weeks since I escaped from Kettering. I've spend a significant chunk of that binge watching Prison Break, and I have to say there are similarities!

Physically, I'm doing great. I went to see my GP last week who explained I've developed transverse myelitis from the meningitis. It means there's inflammation and damage to nerves across the width of my spine at the level which supplies my legs and bladder - if you're really interested, the Brain & Spine Foundation give a fantastic explanation here. It's very rare: there are only 300 new cases a year in the UK, and the prognosis generally isn't great - the norm is for recovery to start between 1-3 months of onset, it can take 2 years to fully recover, and 2/3 of people never do. 

Knowing this, I'm amazed at my recovery. It's been 9 weeks since the onset and I'm reasonably mobile. I tire easily, I get a lot of pain in my legs, and there are occasional moments where they don't seem to work well/at all, but I could live with this for the rest of my life, if I had to. I wonder how well my rehab would have gone if I knew the full extent of my illness while I was in hospital? If I'd have known there was a 1 in 3 chance I'd be moderately disabled for life and a further 1 in 3 chance I'd make absolutely no recovery, would I have pushed myself in quite the same way? At the time, my doctors were being extremely cautious about giving me any hope for my future, but I saw no reason why I couldn't be up and walking and be a midwife. I'd like to think that played a large part in a recovery which, given the conditions I've had and am left with, is little short of miraculous. Moral of the story, kids: a positive attitude can get you a long way.

Knowing how well I've done takes the edge off the (sometimes overwhelming - I used that term because I think 'crippling' is a bit inappropriate, given the context) anxiety which I'm currently feeling. Even though I know I've done incredibly well, and there's no reason why I'm not going to continue to do so, I seem to be dwelling on how easily it could have gone the other way. Statistically it should have done. I'm not sleeping well, and when I do I often get nightmares about being paralysed. I'm obsessively cleaning and being fussy about what I eat because I want to encounter minimal germs to maximise my chances of avoiding contact with whatever gave me the infection. I get extremely nervous in large groups of people for the same reason - plus there's usually a constant stream of "how are you"'s and "you look so well"'s which I feel I can't reply to honestly, because I don't feel well. Perhaps most debilitating of all: I'm suddenly terrified of hospitals. It's been a few weeks and I've accepted I need more help than I hoped I would.

Lastly, I've been reading all of your comments and hearing through friends how many people I vaguely (or don't!) know have been keeping up with this blog. That was never my intention - I meant for it to be some kind of personal ranting space which wasn't going to be inflicted on other people - but it's genuinely flattering to know how many people care, and how many people think it's worth sharing with their friends. Thank you. It's making a tough time a lot easier.

Love Emily x

Days 4-12 out of hospital

Kettering already feels very far in the past.

I've made so much progress since I got home.

I've returned to Uni, I've got 6,000 words of my research completed and I'm preparing for winter OSCE's. I haven't gone back to the hospital yet, but I'm meeting with Occupational Health later in the month. I'm confident I'll be healthy enough by then to return to work, and I can get delivering the last 14 babies I need to qualify. My leg is generally getting stronger, although I seemed to have a bit of a regression in sensation and movement this week. I'm sure it's just a blip; the trend is definitely an improvement. I'm also catheterising pretty infrequently.

The only other things which haven't returned to normal is my handwriting and my speech. My mum noticed my handwriting when I was writing my dad's birthday card - it was completely different to my normal writing. I used to love how I wrote, and got quite a few compliments about it, but now I've got a fairly messy scrawl. I initially attributed it to only having pillows to lean on in hospital, but unfortunately it looks like it might be a permanent thing! My speech is generally fine, but sometimes I get moments where a (completely irrelevant) wrong word slips out, or letters within a word get jumbled. I know this happens to everybody to some extend, but it's definitely happing to me a lot more regularly than it was pre-infection. Reading aloud is the biggest issue: something in the process of converting written words to spoken ones seems to be a bit broken.

Other than that, life is good.

Love Emily x

Days 1, 2 & 3 out of hospital

I'm no stranger to hospitals (both as a patient and a professional!) but I've never been happier to have left one, especially as I had moments in there of thinking it might not happen. The terror I felt when I wasn't able to talk to my mum feels like a lifetime ago.

Monday (the day I got out) was my Dad's birthday - I'm not sure I could have got him a better present! We had a meal in Cambridge to celebrate both things. On Tuesday (day 2) I went back to Uni; it was fantastic to be back. Today (day 3) I went for a push around Anglesey Abbey, and walked for some of it.

There's minimal residual nerve damage now - my foot feels numb; occasionally like it's on fire but Gabapentin and amitriptyline is seeing to that. I'm becoming exhausted extremely quickly, but I'm pushing myself to walk further each day so it's to be expected. So, all I need to do is get re-strengthening the muscles (I've noticed I've got quite a flabby right bum cheek), putting on some weight, and recovering completely from the infection.

Finally, a positive post for you!

Love Emily x

Day 33 - freedom! (And what happens next?!)

Today, after 5 weeks in Kettering General Hospital (I'm rounding 33 days up to 35 and feeling no shame for doing it), I got discharged.

Freedom, and pure relief.

I'm extremely happy, but as this isn't my first long-term hospital stay I'm a bit nervous about what will happen over the coming weeks and months. When you're in hospital, you do what you need to do to get discharged. Once all, or as many as possible, of the medical boxes have been ticked - you go home. To the uninitiated - as I was before 2010 - this is the end of it. You're well enough to go home, therefore you're better, and all this can be put behind you. Not at all true. Home is where you start your real recovery: where you're able to sleep on your schedule and not the nurses, where you can eat what you like when you like (the last meal of the day at 16:45 is ridiculous!), where you don't have to ask permission to go outside, where you remember and re-establish your routines to suit your new 'self', and have an identity which is greater than the tag around your wrist or the number of your bed. But you also feel a huge sense of bewilderment at life outside of hospital, and it's only when you're in a happier and healthier place that you're able to reflect on "what the bloody hell just happened to me??".

Being critically ill changes you as a person - massively. I didn't realise this in 2011 when I was in the aftermath of a Crohn's diagnosis following sepsis in 2010; it was my (medic) housemates who encouraged me to get help. A counsellor explained that feeling guilty for going home and being less ill than the people I was in hospital with was useless; me not having an ileostomy wasn't the cause of them having one - I was lucky. But introducing the concept of 'luck' increased my anxiety: if it was a random occurrence caused by bad luck, then how can I prevent it? What if this happens again? It was well into 2012 when a very close family friend was terminally ill that my survivors guilt peaked, but then the urgency of enjoying precious good times took over. I accepted bad things happen at random, however unfair that seems, and other people's health is not dependent on mine.

When my epilepsy diagnosis came in 2013 I struggled a lot, but I'd argue the side effects of epilepsy drugs and the implications of my diagnosis on my training had more to do with this than the diagnosis itself. It took less than a couple of months to accept having epilepsy made me neither a good person nor a bad person; simply a person with epilepsy.

I'm not sure if knowing about this grief process (because you do grieve; for the person you were mentally and physically, and for your 'old life') in advance is a good or bad thing. This month I've had moments where survivors guilt very nearly overwhelmed me, but I'm extremely grateful for being alive - and not ashamed. Me developing meningitis was a random event: it's tempting to ask "why me?" but more accurate to think "well, why not me?". My survival of, and recovery from, it is a result of the skill of many doctors and nurses, endless support from family and friends, and a bit of hard work from me. Luck - good or bad - is irrelevant.

I'm unsure where to draw the line with continuing this blog. I'm out of hospital, and can walk for short periods, although I still rely on a wheelchair for most things outside of the house. I'm sure many people lost interest long ago in the minutiae of my recovery, and I don't blame them. However, I now seem to have a following outside of my social circles so maybe continuing to write about my recovery at home, outpatient physiotherapy and regaining enough strength to be fully independent may be of interest/beneficial to these readers? Either way, writing this blog has been unexpectedly cathartic whilst I've been here, and it might continue to be now I'm home.

Thank you once again to everyone who helped me get to this point. I feel privileged to be here.

Love Emily x

Days 31 & 32

Day 30 was spent being anxious about my future and endlessly dithering over the best choice of my two options. Days 31 & 32 have been spent doing various reccy's to find out.

Cambridge
I tried to emulate a 'typical day' in my house - getting out of bed, using the bathroom, getting in and out of the shower, using everything in the kitchen, getting up and down stairs, getting dressed, doing my hair, etc. I managed it all fine. I also - proud moment - managed to walk with no assistance or support from my house to the nearest bus stop. My mum helped me do various routes which I regularly do and I managed to propel myself on all of them.

I feel a lot more confident about my abilities after going to Cambridge for the day and trying it out. I'm pretty sure the relief of being out of the hospital for a few hours and in a place I love is what gave me the extra boost to do some unassisted walking.

Beechwood
I give it sympathy points because I saw it on a very rainy day, and yesterday in Cambridge was lovely and sunny.

I can't think of a single aspect of it which I liked. It looked like a retirement home, it smelt like a retirement home and the age of the inmates were that of a retirement home. Making the doors to the bedrooms look like front doors with a number and a knocker does not make it homely.

Decision made (surprisingly easily after seeing Beechwood) - I'm taking my chances in Cambridge, and I'll work out if it was a good idea or not in a few weeks :)

Love Emily x

7 things an Emily in a wheelchair wish people knew (nice bit of clickbait there)

My mum recently took me shopping (Corby, it's not as grim as I expected) and we were both very surprised at how poorly prepared we were for manoeuvring my chair around a busy public space, and also the reactions of people we encountered. So, at the risk of being a total keyboard warrior, here is my guide to not being a complete arse around people in a wheelchair.

1. Just act natural
My mum and I went into a generic high street clothes shop. She walked off to browse things which caught her eye; I wheeled myself off in another direction to do the same. The sales assistant asked if my mum would like any help, then saw me in my chair and awkwardly looked away. Leading me nicely on to...

2. Offers of help are appreciated...
I'm the first to acknowledge I am significantly less able bodied than I was a month or two ago. It's a fact, as much as I dislike it. If you see a disabled person struggling to do something, ask them if they'd like help with it - like you would for anyone struggling to do something. Saying "can I help you with that?" is a completely acceptable thing to do, as long as you respect their right to politely decline. Leading me nicely on to...

3. ...Being patronised isn't
Giving a disabled person help, instead of offering it, is probably patronising. Whether it's an 'offer' they declined which you saw through anyway, or saying "let me help you with that/do that for you" or, even worse, diving straight in and doing something for them - it's patronising, so don't do it.

4. I can talk!
I noticed some questions went through my mum. My legs are crap; my mind is not. I know I'm a stranger to the vast majority of people in the world so they're not to know this, but still, I'd find it far kinder if someone overestimated my communication abilities rather than underestimated them. If someone in a wheelchair is unable to verbally communicate but you talk to them as if they can then their carer can step in and answer for them. Doing this gives those who can talk the opportunity to do so, and makes people who can't feel like they're being treated as an individual and no offensive assumptions have been made.

5. Personal space - respect it!
I am at eye level with your crotch. It's not pleasant for me (or you, once you realise what you've done) to have you standing as close to me as you would a person not in a wheelchair.

6. Look where you're going
High street shops are not designed for people at a lower height - fact. In my chair in a maze of clothing rails I am at eye level with the hangers. This means, from the aisles, I'm basically invisible. But once you're in the maze, don't use you're phone whilst you're walking, or push your pram whilst looking over your shoulder, or never look down. There just might be someone you haven't seen who you're about to walk into.

This also applies to people in the street. If I'm propelling myself, I need to be going at a fairly good speed to keep in a straight line (think cycling - it's easier to keep your balance if you're going faster). Therefore, it's not easy to immediately stop if someone cuts me up. I'm sorry, but the onus is on you to not cut me up - not on me to stop for you.

7. Keep your kids under control, but don't control their thoughts
Kids running riot in shops is annoying for everyone, especially if they seem to be running in completely random directions. If you're walking and you can't anticipate their next move, it's fairly easy to sidestep them if they cross your path. Not in a wheelchair. Just control them! However...

As a child, I can remember being with my parents and younger brother in a shop. In front of us was a woman with some form of dwarfism. My brother (probably already pushing 6 foot) asked "dad, why's that woman so short?" and before my parents could formulate a response, the woman turned round and started going batshit (pretty sure that's the PC term) at my dad and brother. I believe the phrase "I'm not an alien, you know" was shouted. She's absolutely right - she's not. But my brother was a young child, he'd never seen a person with dwarfism before, and he was being curious, not malicious. I don't know what led that woman to her reaction: maybe she's had a lifetime of questions and is fed up, maybe she had a crap day and Alex made her reach tipping point, or maybe she was just a grumpy cow. What I'm trying to say is don't suppress children's natural curiosity. If a child asked their parent why I'm in a wheelchair in earshot, I'd explain to them. 'Shhh'-ing them makes them feel they've said something wrong, and is probably going to make them feel it's not okay to ask a disabled person a question again. This might save you future embarrassment, but ultimately just perpetuates an 'us and them' mindset.

Points made, I think.

Love Emily x

Days 29 & 30

I haven't had much positive to say over the past couple of days, so I decided not to say anything at all.

The Addenbrooke's referral didn't go through because I'm 'out of area' (with a Cambridge address and GP...), which has been a game changer and pretty upsetting.

I know precisely what I need to do to get myself out of this rut: I need to snap out of my low mood, I need to get my research properly under-way and revise for OSCE's, and I need to eat properly so I've got the energy to properly recover - wherever that is. It's really easy to write that sentence, but so much harder to do it.

I've got 2 options:
1. There's an inpatient rehabilitation centre less than 10 miles from my parents house (Wellingborough) for young people with neurological damage. I meet their criteria, and the waiting list is short/non-existent. It could have me up, walking, and completely sorted very quickly. However, going there would mean giving up on the idea of qualifying in 2015, therefore losing the light at the end of the tunnel which has kept me sane for 2 years. I know geographically there's no significant difference between the journey from Cambridge to Kettering or Wellingborough. but I feel very strongly that my life is in Cambridge and Wellingborough is going the 'wrong way'. After rehab - what would I do until September? I'd just mope in Rushden.

2. Go home to Cambridge, and cope. I want to give my training the best possible shot, and I desperately want to qualify with the group I've got to know over the past 2 years. I can go to my GP and get a referral for physio as an outpatient, which may be enough. Once I've been discharged from hospital though, I no longer qualify for inpatient rehab. If I were to find myself in a position where I thought I'd overestimated my abilities and needed inpatient rehab, well, I couldn't have it - unless I were to present at Addenbrooke's, become an inpatient there, and wait for a place at their rehab unit. But there's no telling how long that would take. Also, if I discovered qualifying next year was unrealistic, I've got a bank HCA job which I could do full time until next academic year. As I said, my life is in Cambridge.

Laying here, I can't help thinking of my 20 year old self. In 2010 and 2011 she spent many months in and out of hospital with newly diagnosed Crohn's disease, having to confront the possibility of an ileostomy a bit more seriously with each admission. This was following a life threatening brush with sepsis after an intestinal ulcer became infected. She was pumped full of antibiotics and steroids and immunosupressants to get her condition under control, she was forced to take a year out from university, yet she dealt with it and came out the other side with a better life.

I found a way to do it then, and I know I have no choice but to find a way to do it now. It's just the 'how?' which is bewildering me at the moment.

Any advice would be very welcome!

Love Emily x

P.s. In other, less miserable, news - Sam smuggled in pumpkins (and knives...) and we made some seasonal decorations for my room. Impressed?

Day 28

Another tough title to write.

Today has been up there with the toughest days I've had since I've been here.

This morning I stood up and tried to get to my bathroom. I could feel the dizziness coming over me as I was walking, but my the time I reached the bathroom I didn't know which way was up. I slumped myself against a chair on the floor (easier said than done with only one working leg!) and vomited - lots. I could feel myself 'going' so I lay on the floor, pulled the buzzer, placed towels under and around my head, and then 'went'. I have no idea how long it took for help to arrive, or if I had a seizure or not. All I know is this is how I felt before I was taken to A&E, it's a horrible feeling, and it's happening every morning immediately after I stand up for the first time.

Mentally I'm not doing great, either. I can take some comfort in opting to stay for inpatient rehab because as things are at the moment I'm not well enough for discharge - but that's about it. I used to feel determination and adrenaline from fighting against my illness, and I was encouraged by my improvement. But as I now seem to be getting ill-er again, and have no-one but myself to blame for an indefinite stay in hospital, well, it's not an uplifting feeling.

I've paid a huge price for choosing rehab: for each day that goes by without me being transferred my chances of qualifying in 2015 plummet, and it's pushed personal relationships past the limit, too. At the time I made the choice it seemed absolutely the right thing to do; doctors, nurses, physiotherapists and family told me they were pleased I made it. Now, though, it's cost me so much and I keep beating myself up by thinking I could have kept my life together by being braver and just getting on with things.

At the moment I'm unhappy, but I've got to try as hard as I can to stop 'unhappiness' becoming 'depression'. There's nothing in here to help ease depression, so I've got to prevent it. I'm sorry, I don't know why people read this blog (but you do; I'm getting 200-300 hits a day) because it's just an unending tale of woe and misery. I'm sorry.

Love Emily x

Day 27

In today's physio session I saw big improvements with muscle tone and movement in my thigh and knee. I'm no longer reliant on my hip to roll over or swing my leg forward; my knee is starting to bend and do some of that. My foot and ankle are still much the same, though. The session had to end early because I was feeling dizzy and sick through exhaustion - all I had done was a couple of stretches (mostly assisted by the physiotherapist) and then stood up. There's still a long way to go, which is why I think rehab is the right thing to do.


Yesterday I was untethered from my catheter bag, and taught how to intermittently catheterise myself. Basically, when I feel like I need a wee (I can feel that sensation now, yay!) I go to the toilet and instead of doing it the 'normal' way, I put a tube into my bladder. It took a while to get the hang of it (my medical friends are well aware of the difficulties of catheterising someone else, and that's with a good view +/- a torch...) but now I can do it with no problems. As "CSF infection" is the most specific diagnosis I have and without a more concrete one there's no predicting my prognosis (and even if a definite diagnosis were to be found, neurology is so unpredictable that we probably couldn't be certain of my prognosis anyway) then I don't know how long term a measure this is, but it's a small price to pay. What's bothering me more is my output is matching my excessive thirst and now I don't have the option of lazily watching my bag get fuller :(

Day 26

It's been a very mixed day today.

I woke up, stood up, and had my usual headache/vomit/unresponsive deep sleep routine which killed the morning.

When I woke up this afternoon, one of the reg's came and told me he thought I was stable enough for medical discharge. As they're words I've been wanting to hear for nearly a month I didn't expect them to terrify me, but they did. For the past couple of weeks I've been determined (or stubborn; I guess it's a matter of perspective!) to go home (Cambridge) from hospital - my mum would live with me for a week to help me get used to things and get to Uni, then she'd go back to work and I'd cope just fine. It'd be grand. I've been so excited by the thought of no longer serving time at the NHS's pleasure that I didn't think about the reality and practicalities.

I can currently walk - with a frame - for about 50 metres. After I've done this I am exhausted: my obs were once taken after I'd done this and my pulse had risen by 70bpm and my systolic BP by 30. I still have almost no sensation in the lower leg and foot on my right hand side, and I can't place my foot flat on the floor. I can use my frame to get myself from my bed to my en suite bathroom and back, but for anything else I'm reliant on my wheelchair. This is before the emotional impacts of having a life threatening illness, sudden disability and a fair amount of hospital institutionalisation are accounted for. When I realised doctors were willing to discharge me and let me see through my overly optimistic plan... I panicked.

I'm not sure what made me think about the logistics of stepping into a bath to have a shower, or getting my chair through the narrow halls and doors of a Victorian mid-terrace house, or trying to reach cupboards and stoves and sinks in a chair to cook, or being able to stand in front of a mirror long enough to do my hair, or getting up and down stairs, or opening heavy fire doors with one hand, or not being able to take a mug of coffee from the kitchen to the living room. And those are just things around the house; the terror went up another notch when I thought about going out of the house. But today I did think about all of those things and it made me realise that no-one was being a pessimistic killjoy by advising I have intensive inpatient rehabilitation, it's what I need (psychologically as well as physically) but so far haven't been able to admit.

Admitting that to myself, and then to the medics, felt like a huge weight had been lifted.

So, I'm now in Kettering for as long as it takes for a space to become available at the rehab centre at Addenbrooke's. I had my breakdown stupidly close to 5pm, so the referral will be made tomorrow. A space could be free on Wednesday, it could take a month, or it could be any day in between. I'm really looking forward to it, and I'm staying hopeful that Jaws will be allowed to come with me :)

Love Emily x

Days 23, 24 & 25

I had a busy day on Friday, with lots of visitors (some even brought gin!). I heard mutterings about me maybe possibly potentially being discharged on Friday too, but I've been in this NHS game too long to think anything may realistically have come of it. Well, Friday came and went and it's now Sunday, and I'm typing this from room 6. I tried my wheelchair for the first time - dad made me do a 'wheelchair proficiency' test up and down the ward before I was allowed around the rest of the hospital in it. I've been given a pair of zimmer frames to take home - one for upstairs, one for downstairs. My custom leg braces also arrived - I've got one for now which is holding my right foot straight and putting it at a 90 degree angle in relation to my leg and it is INCREDIBLY painful (still hitting the opiates hard). I've got to wear this for a minimum of 8 hours a day, although the lovely man from orthotics said 24 hours a day is the ultimate target. I've also been fitted for a smaller one which I can wear inside a shoe as time goes on and I get walking properly.

Yesterday morning I woke up feeling incredibly groggy because I'd been guzzling morphine during the night to ease my leg and foot pain (I was still unsuccessful). Mum and dad got permission from the those looking after me to take me for a spin round Wicksteed park, but I hadn't even been wheeled to the car before I'd been sick twice. Still, we persisted, and I felt loads better once we were there - there are some photos below. Once I got back home (KGH is starting to feel fairly homely...) I was exhausted and slept solidly for a 6 hour afternoon nap.

Sunday morning I took another dip. I woke up feeling incredibly productive and got some of my research done, but then a headache, feeling of nausea and drowsiness came out of nowhere. After a few minutes I was being violently sick and begging for more water but as I'd already has 3 litres since midnight I wasn't allowed any. A quick jab of cyclizine stopped me vomiting, but the headache and dizziness stayed until the evening. Diabetes in all of its forms has been ruled out many times over, so a neurological cause of my excessive thirst is suspected.

I still can't say this enough: thank you. Thank you for all of your comments and offers of help. Thank you for understanding that, however much you'd like an update directly from me, my world has been turned upside down and I've not been able to give you that. Thank you to the people reading this who may not know me that well, but have been keeping my family strong for me. Thank you to those who have unrelenting faith I'll walk again and be a midwife. We're going to have the party to end all parties when I qualify.

I didn't get the hang of this 'feed the ducks' thing. 

Day 22

Overnight my blood pressure plummeted. It's normally quite low (a systolic of 90-100 is usual) but during the night it was averaging at 70, which is pretty concerning. I was reviewed by the on-call reg each time it happened (it was being checked every 15 minutes at one point) but no obvious cause was found so it was just put down as another one of my idiosyncrasies.

What's worrying me far more, though, is the lady in the side room opposite mine. She regularly uses her call bell and cries for help. Initially the staff did their best, but her requests for help became so regular that yesterday they told her they couldn't help her use a bedpan because it was meal time and they needed to feed other patients. I understand that there are finite resources in every area of the NHS and seemingly infinite demands - and I'm also familiar with staff using the term "buzzer happy" in a dismissive way towards patients. This lady ended up wetting the bed, and subsequently became even more distressed. Since then she's been constantly calling for her son, "James" and becomes increasingly inconsolable every minute that he doesn't come (regardless of visiting hours). When (my) James came to visit he found his name being hysterically called difficult so shut the door of my room to mute it slightly. This is the reaction I'd expect from a person who spends his working life doing mystical things with computers, but I'm finding it incredibly upsetting that this (along with shutting her door) is also the strategy of the nurses and HCAs who spend their working lives looking after vulnerable people. I feel awful, and fairly useless, because I'm not able to get up and help her.

As I've said in previous posts, I'm making slow but steady progress with getting movement and sensation back in my legs, but for each day I take some steps with a frame or try some stairs I spend the next exhausted. I think some people may be being overly optimistic about these signs - sure, they're great news, but it's still going to be many months of intensive rehab and physio before I'm able to walk unassisted for a reasonable amount of time. 

Also, my leg wasn't the only change which happened to me when I first became ill. I'm still having difficulties talking - most of the time it's normal, but quite often I say a word that I didn't intend to, or pronounce a word wrong, or mix up letters within a word. Basically, I'm speaking as a person with dyslexia would write. I'm also having to put significantly more effort into planning what I want to say. Once I've got my words straight in my head and start speaking them, I find it difficult to remember them if someone interjects. I'm having some pretty amazing mood swings too (it's too early to say if that's medication effects, a form of grief for my 'old life', or another sign of damage) which are made worse when I get frustrated about not being able to communicate as I used to. The vision in my left eye has also significantly deteriorated - my right eye has taken a few beatings from uveitis over the years so my left eye was always the 'good one', which it isn't any more.  

There's a meeting tomorrow (which I'll be attending) to lay out all of my options. Medically, I think there's very little than can be done for me as an inpatient. There are a few lumbar puncture results outstanding, but I feel they could be dealt with on an outpatient basis. I know the team looking after me feel uneasy about discharging a patient with an unknown infection who keeps showing abnormal signs of unknown significance (extremely low BP, VTE, sporadic drowsiness) but it's what I desperately want. My physiotherapists have been pushing me towards having intensive rehabilitation as an inpatient in a specialist neurophysio unit, but I want to discuss the community or outpatient options before I make a choice.

If you read all of that you deserve a gold star! 

Again, I'd like to thank people for their messages, but please stop calling me an inspiration, a role model, a hero, or anything similar. I'm not. I'm just doing what any of you would do in my situation, and I have no other option. I only post on here when I'm feeling up to it so the majority of you haven't seen or heard me at my worst: I'm certainly no inspiration then. The real inspirations and heroes are my family, James and my friends - the people who could very easily remove themselves from the situation, but who so far have chosen not to.

Love Emily x

Day 21

Today's post is one which I expected/hoped not to write. I think I thought I'd be in here for a week (or a fortnight, maximum) and one morning the use of my legs would return as quickly as it vanished. This would be followed by a brief apology from the staff ("there's been a cock up, those aren't your scan/LP results, you're fine, go home and qualify as a midwife") and then I'd go back to Cambridge (via Rushden for a cuddle with Jaws, of course), pick up my old life exactly where I left off and forget all about this. But on day 21, this obviously hasn't happened, and isn't going to.

I'm making frustrating amounts of progress. Not big enough for me to think "ah, that's grand, I'll be able to go on my next placement in 3wks and just use a stick to walk" but not small enough for me to completely give up my last hope of qualifying this year either. It's the uncertainty which is making me a bit of a mess. I'd be devestated if I were forced to intermit (my training has been an excellent distraction/coping strategy for a lot of very shit life events over the past 2 years) but if I knew rather than suspected then I could get working on plan B.

Let's look at the positives, though. I'm laying in a comfy bed in a side room with a disabled person en suite having (admittedly quite shit) food brought to me, life is feeling quite nice when the morphine kicks in, and I've got lots of Harry Potter films to drowsily watch (and GoT, for when I'm less high). 

I think legs are overrated.

Love Emily x

P.s. Look at this little fella that my dad made out of stolen hospital equipment...

Day 20

I give it 24 hours, maximum, before my nan brings me a clipping of this news story (source chosen very much on purpose) http://www.dailymail.co.uk/sciencetech/article-2800988/world-man-spinal-cord-severed-walks-paralysed-fireman-recovers-thanks-uk-research.html

In other news, I had an ultrasound of my right arm and clavicle (the site of my PICC line infection) to rule out a blood clot. It was a precaution, nobody expected me to have a blood clot, but I've got a blood clot. Amazing.

In even better news: this evening I did TWO trips out of bed with my frame, and on the second one I managed to get my foot flat on the floor!

I'm pretty much the same mood wise - some good days, some bad days. Still extremely tired, though, and starting to feel like I'll never be discharged.

Anyway. Chin up.

Love Emily x

Day 19

Two words: Night. Sweats. Well, actually, I'm doing a lot of daytime sleeping (and therefore sweating), so really just 'sweats'. I can't seem to get enough fluids on board - and this is just boring old squash, there's not a gin in sight (no matter how much I beg)! Hopefully it's a sign of the infection becoming less severe and something my body is able to deal with in a more 'normal' way. My mum, however, is convinced it's diabetes.

I had some results from the 2nd lumbar puncture today. My CSF glucose is still low, but a bit higher than it was. I've got the same amount of blood, and still white blood cells too. Given that the glucose is improving it suggests the infection is on its way out, but as we don't know if that's a result of antibiotics or acyclovir or just the natural course of events then it makes sense to see out the 21 day infusion. So, for this reason, I'm saying AGAIN that I'll be off to theatre soon to have a Hickman line in (although I've actually made it onto a theatre list now, so it really should be imminent)!

On Friday I had a successful TWOC (trial without catheter, but I love saying TWOC), but over the weekend my central line infection meant I was pretty ill so I was re-catheterised. It makes sense to keep it in until I'm a bit better, but I feel a lot happier about having it knowing it's not the permanent measure it very easily could have been.

My mum has had to ask some people not to come to visit. I'm so sorry about this, but it's still changes from hour to hour if I'm well enough to see people - and I don't think it'd be any fun for either of us if you'd arranged to come over and I slept through the entire visit. I think it's (marginally) more polite to give you the heads up before you set off and take out a mortgage for the parking charges...

Anyway, I'm starting to feel like I'm making tiny amounts of progress. My good days are starting to outnumber my bad days, but I'm still not going to be out of here anytime soon. I've even been cracking on with my dissertation!

I know I end every post like this, but thanks again for all of your kindness to me, and to my family. It's immensely appreciated.

Love Emily x

Days 17 & 18

I've had a bit of a dip since my last post :(

On Friday my arm with the PICC was quite painful, but no-one was overly concerned because it was only inserted on Monday. Over the weekend, though, a 15cm section of my arm became swollen, red, hard, hot, and agonising. I was fobbed off by nurses and SHOs until Saturday evening when a reg came to review me. He tried to fob me off too, so I went into 'Midwife Mode' and asked: if I developed sepsis from a clear source of infection into a central vein, would he be happy to defend his plan of 'let's keep it in and see how it goes' for a neutropenic patient? It then got removed, I had another cannula put in, and I'm back on IV antibiotics. It's still very painful, and I'm spiking a temperature.

I'm also feeling very wobbly (in every sense!) - I keep lurching between feeling privileged for being alive, to terrified about how things so easily could have turned out very differently, to frustrated at my loss of independence, to overwhelmed by the patience and love my family and friends have shown me, to guilty for putting pressure on them, to being paralysed with fear about all aspects of my future, to absolute determination to make it all right, and then, finally, to really wanting a cuddle with Jaws to make it all better.   

Again, a huge thank you for all of your support. When I have moments where I think I can't cope, I read your messages and cards and feel better. Thank you.

Love Emily x

Day 16

Moan time. I've had a night of crap care from agency staff: observing record falsification, major drug errors (or completely missed doses) and essential things in my room (call bell, water, frame) being left in completely inaccessible places. I'm terrified that I'll have another seizure (entirely possible, given they seem to be making up the dosage and frequency of my anticonvulants as they go along) and won't be able to fight my corner for a little while. I don't trust some of the staff here enough to be sure I'd be safe if that were to happen. I've made a complaint to PALS who said I'm not the first to raise issues with these agency nurses, so hopefully something might change.

On a more positive note: I saw a neurology consultant today (I love this lady). She's completely puzzled by me. She was really helpful in breaking the situation down into 'what we know' and 'what we suspect'. 

We know I had 6mm of fluid on my brain on 3rd October, and we know that it had gone by the 6th. We know I've had right leg paralysis with a mix of diminished and absent reflexes for >2 weeks. We know I'm retaining a lot of urine. We know my spinal MRI showed nothing structural which could plausibly explain the fluid or my leg. We know my CSF indicates meningitis, but we also know it's not one of the 9 most common viral infections screened for. We know I'm moderately neutropenic.

From this, we suspect I no longer have an abnormal amount of fluid on my brain. We suspect the cause of my leg is in my spine. We suspect that the cause could be either an incredibly rare CSF virus (which would explain the low neutrophils) with no available treatment, or a fungal infection of the CSF. We suspect, given my history of autoimmune diseases, that the cause could also be autoimmune.

Because of the uncertainty, I had a repeat lumbar puncture today which was a lot less pleasant than my first one... although nowhere near as traumatic as my central line insertion! Depending on the fungal and autoimmune results of this, I may be discharged to neuro rehab as early as sometime next week - although given how long it took for the results of my last one, I'm a bit skeptical! I'm hoping that my rehab will be in Cambridge(shire) so I'm closer to my old life in the geographical sense, if not in any meaningful way.

Also - save the best news 'til last - I removed my catheter today, and managed to pass a decent amount of urine without applying abdominal pressure or feeling any retention afterwards. It's really easy to say "well done, you had a piss, welcome back to society", but it means I've got sensation and control of another nerve so it's a huge step forward.

Well, anyway, I'm proud of myself.

Love Emily x

Day 15

Had both good and bad news today: my LP viral PCR came back negative for all infections screened for. This tells us it's not one of the 9 main viruses looked for (but there are hundreds of others that weren't looked for) - but only the ones with treatments available are included in the screen. So now I've reached the end of the road for what the medical team can do for me, so it's up to neuro to get scratching their heads again. On the bright side, this means I no longer need acyclovir so I don't need a Hickman line inserted.

Despite the lack of theatre visits, today has been quite a heavy morphine day. I'm getting intermittent bursts of agony in the 2nd-5th toes and front sole of my right foot - it seems to be linked to touch, however light. The pain feels like I've been walking in snow for ages and my foot has gone numb, but then I've gone home and warmed it up in front of a fire. It's like shingles has taken steroids and come back for another pop.

I had my 1st physio session today, too. We didn't try any steps because my foot has moulded itself in a very odd position (I'm getting a sexy little leg splint to match my chair, frame and stick) but I can do tiny (seriously minuscule) amounts of movement now, which is great news. I've been given some exercises to try to keep the nerve pathways active, and I'm going to try to do as much passive movement of it as possible.

I'm hoping an Addenbrooke's transfer might happen soonish - I'm definitely becoming too institutionalised in here!

Love Emily x

Day 14

I'll start by making a huge apology to everyone who has sent me a message in any form. I'm terrible at replying at the moment - I've been on a fairly hefty combination of anti-seizure drugs, opiates and sedatives so differentiating between what I read when I was high vs what I dreamt I read is a bit tricky, plus my 'awake hours' are a fairly scarce commodity which I'm using to write blog posts, keep up with Uni work, and eat. A fairly frequent comment which I've been getting from visitors is they didn't realise how ill, weak, and - frankly - feeble I am... photo below for proof! I'm trying not to let that come across too much in this blog, but please know my lack of replies are nothing personal.

This morning I felt particularly sick and dizzy and then I noticed a fair bit of blood on my bedsheet, but I was too high to twig that it wasn't a postpartum bleed and therefore wasn't a good amount. A nurse came in for something entirely unrelated, got a bit twitchy, and realised a bung on my central line had come loose. It's been secured a bit better and the bleeding has settled now, but I spent most of the rest of the day sleeping that little incident off. The plan is to try to get me back to theatre tomorrow to have a Hickman line fitted.

I have also purchased a whistle because minimal attention seems to be paid to the call buzzer - it might also annoy the staff here enough to get this Addenbrookes transfer happening :)

Love Emily x

Days 12 & 13

Yesterday I went to theatre to have a PICC (peripherally inserted central catheter) line inserted. I'm still very sleepy and needing a lot of analgesia - I had no idea it would be so painful. It's also been inserted in my right arm so until it becomes less painful I have almost no power on that side.

I've been struggling to stay positive recently: although I realise I'm lucky to be alive and only lost the use of one limb, hopefully only temporarily, it's still very hard to accept. I'm getting used to being in hospital (and will stay here for the near future) which has become my 'new' life, but I don't think there's going to be much of my 'old' life waiting for me when I get out. Still, I haven't got a choice, so I'm just going to have to look incredibly hard for some silver linings.

For this reason, I'm going to take a bit of a break from Facebook and won't be posting updates on there. I don't expect for a second that other people should stop succeeding at being a midwife, relationships or being happy - or being proud of it and sharing it on social media - but when my greatest achievement is 'I sat in a wheelchair for 1.5 hours, and then slept for 7', well, it doesn't feel great. 

I'm going to keep updating this as often as I can though, and hopefully it won't be long until I feel more positive and less bitter and will be back on Facebook :)

Love Emily x

This arrived for breakfast...

...that deal with the dietician is off.

Days 10 & 11

My parents and I have devised a game - I get the following number of points for each person I poke with my stick each day. It's passing the time quite well.

Medical student = 1 point 

One of my visitors = 2 points 

Another patient/one of their visitors = 3 points

HCA = 4 points

Nurse = 5 points

SHO = 6 points

Sister = 7 points

Reg = 8 points

Consultant = 10 points

Tomorrow I'm going to theatre to have more lines put in, so I might be a bit quiet for a day or two. I'm sure James will do a post on my behalf if anything big happens before I'm able to write one for myself.

Love Emily x

Let's talk about bladder and bowel function

Not a sexy topic, I know, but that's exactly why it's one that needs talking about.

Before 1st October my only experience of bladder and bowel issues (Crohn's aside...) was looking after women with pelvic floor trauma from childbirth. I often feel the maternity system belittles these ladies ("it's normal, darling"; "you've just pushed a baby out, things are going to be a bit looser"; "tell your GP if you're still incontinent at your 6 week postnatal check"), the most constructive thing anyone says is "do pelvic floor exercises" (with no teaching or guidance on precisely HOW), and you only earn a referral for physiotherapy if you're 'lucky' enough to have a 3rd or 4th degree tear.

But after 1st October when the nerves supplying my bladder became damaged along with the ones to my legs it's become my issue and, rightly or wrongly, I care a bit more.

A problem was first noticed when I had agonising abdominal pain when I wanted to pass urine. I kept trying to go, but just couldn't. I had my bladder scanned, and there was 2 litres in there (normal capacity is 400-600ml)! Since then I've been catheterised (a tube inserted into my bladder to drain urine into a bag) and feel a lot better. As my prognosis is still very unknown, I don't know how long term a measure this is.

What I'm trying to say loud and clear is: I am 24. A dodgy bladder doesn't just affect elderly people.

So far I've been very limited in who I've seen - it's only been nearest and dearest that have visited and they've all been fantastic about me laying in adult nappies with a bag of piss strapped to my leg. Plans have even been hatched about filling a clean one with wine, smuggling it into a bar, re-inserting it when the wine has gone, and saving myself a trip to the loo later on. I'm a huge fan of inappropriate humour so this is exactly how I want to deal with it.

Sadly though, I know when I get out of hospital it might be a different story. Even some of the nurses in here don't know quite where to look: they feel so awkward (pityful?) about a young woman with a catheter - and they've been trained to deal with it! I suspect I might be negatively judged by some people just for writing this post because it's 'gross' - but why is it okay for me to talk about my leg, but not this? It's the same root cause!

So, those of you still reading: what can you do to help?

Acknowledging it is the most helpful thing. If you're going to the loo (girls tend to go in groups...) don't avoid asking me if I want to come, too. Catheter bags need emptying at the same rate as normal functioning bladders! But at the same time, don't make a special effort to mention it to show how 'fine with it' you are. My bladder function was not part of my identity before 1st October, and it's not going to be after.

I think you've probably all heard enough about my bladder now.

Love Emily x

Days 8 & 9

I had another seizure early yesterday morning, and woke up yesterday afternoon in my own room. I think that's a definite silver lining to having the emergency buzzer pulled for me all the time!

The neurologists looking after me are still stumped what the actual problem is: the most anyone can tell me is scans and lumbar puncture results indicate I've got an infection in my CSF, but no-one knows quite what it is or what to do about it because I, generally, seem too well to have meningitis! I've started IV antiviral therapy (on top of the IV antibiotics I'm already on) on the off chance that it might work and this will last for 21 days. It's day 2 and I've already blown 2 cannulas. The plan is to take me to theatre next week to get a more permanent line in place.

My family and I have had 'words' with the nursing staff because there seem to have been a lot of assumptions made about my age, and therefore my abilities. I hate admitting it, but I'm currently every bit as disabled as the little old ladies I'm sharing this ward with. Since then the care has significantly improved and I'm feeling very well looked after :)

A dietician came to see me (the nurses are a bit shocked by how little I eat) and told me, in no uncertain terms, that living on two bowls of coco pops a day is not going to get me walking again... 1 point to James. We compromised: I'm allowed to order from the children's menu if I have 2 scrambled eggs for breakfast.

I'm still too weak to stand and use my sexy little walking stick, but it's quite fun prodding people with it.

Love Emily x

P.s. I've never fully appreciated the pain of a tissued cannula until 100ml of acyclovir went through it :(

Day 7

Today, I had a shower AND sat in a chair (with a lot of help...). It's amazing how drastically what I'm pleased with has changed in less than a week.

I got some lumbar puncture results, too. The most probable diagnosis was Guillain-Barré syndrome, but the protein level in my CSF (cerebrospinal fluid) was normal so I don't have this. The LP did show that my CSF glucose level was very low compared to a blood glucose sample taken at the same time and there was also some blood and white blood cells in it, which indicates a spinal cord infection, but so far all of the infections screened for have been negative.

I think the plan is to transfer me to Addenbrooke's and repeat the lumbar puncture in a few days with some extra tests on the fluid.

I've also lost 5kg (~10lbs) since I've been here, making me well and truly underweight. I'm still incredibly knackered and doing an awful job of replying to your messages, texts, and comments but they've all been read and I hugely appreciate them, so thank you.

Love Emily x

P.s. I'm trying to get my mum to bring Jaws for a visit. Apparently there's some infection control issues around bringing cats into hospitals, especially shark cats with ASBOs, but I think with enough pressure from you guys she'll be forced to change her stance :)

Day 6

After yesterday's post, I was hoping to have something more to say. I had a brain and spine MRI and got the results fairly quickly: aside from a couple of bulging discs (moving house clearly took its toll!) and the scoliosis we already knew about, my spine was completely normal. This was a total shock for both myself and the team looking after me. At first it was entirely welcome - I assume I'm far from alone in not wanting a spinal tumour - but the relief quite quickly gave way to thoughts of "well, if the cause isn't spinal, then what is it?". Thankfully the fluid from my brain has also drained.

This afternoon I had a lumbar puncture (a procedure which James had kindly described as "really painful") which I couldn't feel at all. 

The headache continues - morphine time now.

Love Emily x

Day 5

This is my fifth day in hospital, and most of you don't know about it yet. It's probably best I tell you the story.

Wednesday 1st October I left work early and went home to see my parents in Northamptonshire. I was feeling tired, spaced and a bit down. Frankly, I went home because I wanted a cuddle with Jaws, my cat. I can remember meeting my mum and not really being able to talk. As the evening went on I got progressively drowsier. My mum and dad helped me into bed, and then I had a seizure. I'm told that after I stopped fitting I hallucinated - I could see my eyes from the outside, I was a yellow snake with black splodges and Jaws had swapped my legs with fat ones.

By Thursday 2nd I was even drowsier and I started to lose sensation and movement in my legs and I ended up in A&E in Kettering in the afternoon. I'd got a decreased patella reflex and an increased plantar reflex on my right side, and my right foot had assumed a pretty freaky looking default position. I also absolutely could not pass urine - I was starting to look pregnant and was behaving like I was in labour from the pain. I was catheterised, and had 2 litres in there!

Friday 3rd October I had a CT scan of my head which showed fluid on the left side of my brain, but no clear cause for this. A brain and full spine MRI should be done soon.

On Saturday 4th I had a sudden burst of excruciating head pain, followed by a seizure. I woke up surrounded by an intensive care team, and an anaesthetist trying to intubate me, and was very quickly given some lovely sedatives.

Yesterday I woke up properly and today, 6th October, should be the day I get scanned and find out what's causing this. It's been a pretty difficult weekend; not that I've been aware of a lot of it. At first I felt as if nothing was being done because I'd lost a significant amount of my mobility and independence literally overnight, but then I became scared of my deterioration which seemed to happen by the minute. Luckily I've had close friends and family with me to keep me sane.

I'm sorry that most of you - family included - know nothing at this point, but my parents and I feel it's best to know the results of the MRI so we have a better idea of what to say to people instead of just "I've got fluid on my brain" with absolutely no idea of cause or prognosis until the MRI, and hopefully we'll know a bit more by the time I publish this.

I hope this blog will be a good way of keeping me sane whilst I find out what's going on, and also save me having to update all of you individually!

Love Emily x