Summer is here :)

It looks like summer has finally arrived! I'm finding this great from a pain perspective; I've learned cold weather is my enemy, and I've not needed morphine for more than 6 weeks. On the down side, the temptation to start wearing flip flops and pretty summer shoes got the better of me. I've discovered that not only do I struggle to keep them on, but I'm also getting some pretty impressive injuries on my feet. The sensation in them is rubbish, so the instinct which tells you "this hurts, therefore stop doing it" isn't there any more.

It feels so strange to think 6 months ago I was immobile in Kettering. It's starting to feel like it was a different world - I don't feel under constant threat any more and I'm excited about my future, instead of terrified.

Speaking of exciting things, Nepal preparation is going well. I've had all of my jabs, got medical insurance (I kid you not when I say that cost more than my flight from Kathmandu to Delhi), and I've applied for Turkish, Nepalese and Indian visas. My mum also held a coffee morning over Easter which raised an insane £400! Thank you so much to everyone who came along and supported her, made cakes and donations, and sent some really touching cards. It's great to be surrounded by such supportive people; I know you all played a part in keeping my parents strong when the future was looking like a very bleak place.

I'm on a placement block at the moment (Delivery Unit) and it's going brilliantly. I'm on 35 births, so I only need 5 more with 7 weeks of intrapartum placement left. I promised my mentor cake when I reach the magical #40 so she seems as motivated as I am :)

All in all, things are looking pretty good!

Love Emily x

"A normal reaction to something quite abnormal"

The more astute of you may have noticed it's been a while since my last post. I've spent this time trying very hard to get my head together, and it's been hard. Harder than seeing off meningitis. Harder than 5 weeks in hospital. Harder than learning to walk again.

I don't want to focus too much on negatives; I'm in a happy place now, and I intend to stay here, but maybe if I'd found a post like this a couple of months ago when I was at rock bottom it might have helped, and maybe it might help someone else in a similar position. In brief: I was diagnosed with PTSD (post traumatic stress disorder, otherwise known as 'shell shock') in February, and I've been having various treatments since. The title of this post - "a normal reaction to something quite abnormal" - is something a therapist said to me, and has helped me make sense of how I felt.

I've worked why I felt so lost after coming out of hospital: it's because there were moments when I didn't think I ever would, and I felt like I wasn't real - like a ghost. For the first 4 months after discharge I'd have a nightmare most nights, always of the same things - being paralysed, having my head held still by a mesh mask for over an hour, an intubation attempt, and bleeding heavily from a loose bung on my central line. These have almost stopped now, and I've reached a point where I'm happy to have survived.

I'm happier, and everything seems to be falling into place. I passed my final OSCE's, I've near enough caught up on placement hours, my dissertation is as good as completed, and I'm on 34 out of my 40 deliveries. In October, if someone told me I'd be in a position to qualify with the group I started my training with by April, I wouldn't have believed them. In fact, I would have given them a damn good prodding with my stick.

In other news, I recently booked my flights to Nepal. I'm incredibly excited now - bring on August!

Love Emily x

I passed my neonatal OSCE!

Today I got my neonatal resuscitation OSCE results and I passed, fairly well. I'm a little disappointed with my result, but the rest of my cohort had an extra 2 months preparation time and didn't do the OSCE with a spinal lesion causing havoc. All things considered, I did well :)

This week at work has been great, and I've been privileged to deliver 5 beautiful babies. I now only need 6 more until I've reached the number I need to qualify which I'm really proud of, especially as all the other people in my cohort have had 300 hours experience than me.

At the moment my pain is well controlled, I'm walking without a stick, I'm loving being back at work, the academic side of things is causing a lot of stress but I'm plodding through it, I'm finding time to see more of friends, and - in general - life is pretty good.

Love Emily x

Shit Life Top Trumps

I thought quite a bit about whether to carry on with this blog or not. The purpose of it was to keep many people informed with a single post as I discovered more about my illness and diagnosis. Now that the bulk of that is in the past it seems like a narcissist self indulgence to continue, but after a chat with a friend about how we tend to judge the inside of ourselves by the outsides of others I changed my mind. Nearly everyone who has commented to me about this blog has said how honest it is, so maybe it might be of use to other people with transverse myelitis. Even if it isn't. there are lots of other themes running through it: midwifery training, travelling, and generally adapting to life with a sudden disability. My stats tell me people are still viewing it - and I'm still finding it cathartic to write, even if those visitors are accidental clicks!

I've been back at work for a while now, and I even did my first full (12.5) hour shift this week. It was exhausting - but it always is - and I relied quite heavily on my stick towards the end, but I managed it. I'm also discovering more and more that cold temperatures are not my friend. After the hellish agony of New Year's Eve (having Crohn's and meningitis, and working with women in labour, has given me a pretty good idea of how bad pain can be - but the pain from transverse myelitis is just in a different league) I've been wearing hiking socks as everyday wear, a heat patch constantly on my back and keeping a bottle of Oramorph close to hand. All these things have helped the pain, but it's still taking at least 30mg of morphine to get me truly comfortable at it's current peak.

Stress is also a big factor in my recovery now, I think. I missed 2 placements while I was in hospital, which means I'm 300 clinical hours down. Trying to find the time to fit in those 300 hours in an already challenging course, whilst preparing for OSCE's, getting essays done and my dissertation finished is pushing me to my limits. I think all of my course mates feel the same, and (without meaning to play Shit Life Top Trumps) they're all doing it with relatively good health and two legs which work all of the time. I'm really struggling to stay motivated, and at the moment it's only the thought of Nepal which is spurring me on. Some days I want to take a break from it and come back in September, and I still haven't ruled that out. I'm trying to take it day by day and not get overwhelmed.

The one thing writing this post has taught me is I really like the phrase Shit Life Top Trumps. I think I'll make it the title.

Anyway, I hope the new year is being nice to you all!

Love Emily x

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