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
Tuesday, 16 December 2014
Thursday, 27 November 2014
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
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
Monday, 24 November 2014
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
Friday, 14 November 2014
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
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
Wednesday, 5 November 2014
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
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
Monday, 3 November 2014
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
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
Sunday, 2 November 2014
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
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
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