The good kind of hospital appointment!

Unsurprisingly, having as many hospital appointments to attend as I do isn’t fun. However, this week I’ve been to two appointments and come away smiling! 

On Monday, I got the fantastic news that on 4th January, after exactly a year on antibiotics, I will take my last little red and yellow pill. The medication has been part of my life for so long now that I’m really excited to turn off the alarms that go off on my phone three times a day. I’ll hopefully also be a little bit less tired and less hungry all the time!

9CB1E40E-2925-45B9-A8AD-9A7819D54488Then, on Thursday I had an appointment with the Ear Nose and Throat team. Everything looks good and they’ve put me on the waiting list for my final surgery. The wait list is currently four to five months, so I’m hoping that by next summer I’ll be able to put all of this illness behind me! It also means that I get one more shot at rocking this awesome hair style!

Whilst I can beat the illness and be cleared of infection, I’ll have the lasting effects of a brain injury far beyond next summer. Whilst the brain can heal, it’s much slower to heal and I might never get back to where I was pre brain injury. 

Headway have helped me move in leaps and bounds already and I’m so excited for the fundraising plans I’ve got over the next few months!

Running is going well, even in the cold and I’m really humbled by some of the amazing donations people are making. 

In addition to running the marathon, I’m organising and hosting a pub quiz and silent auction in Oxford on 19th February. I’ve had huge support from businesses in Oxford so far, but I’d love it if some of my readers could donate an auction lot or two. Maybe you have some sports memorabilia in the attic that you don’t want? Or a holiday home that you could spare for a few days? I’d love to hear from you. Just use the contact form on my blog or send me a message on social media. If you want to come to the event, then tickets will be on sale soon after the new year. There are just a few details to iron out! 

Finally, listen out for me on the Kat Orman show on BBC Radio Oxford on Tuesday 17th December. Kat and her team have asked me to come in and tell my story to their listeners and I’m so grateful for the opportunity!

Once again, thank you for reading. Don’t forget you can donate here, or share my story on social media. 

Concentrating on concentration

This week, I’m talking about something that is sure to bring dread to most people. Exams.

As I’ve probably mentioned to everyone I know once or twice, (sorry), I have an exam next week. I sat the exam last December in the midst of my mental health problems and given what I was unknowingly dealing with, it’s no surprise that I completely flunked it. Results day came around in the middle of January and I was so ill that I replied to my automated results text!

Now that I’ve got the worst of my illness behind me, I’m determined to do as well as I possibly can next week. However, studying for an exam when you’ve got a brain injury isn’t easy.

Over the last few months I’ve been working with Headway on methods to improve my concentration. It’s something that I’ve really struggled with since my brain injury. I’ve got really good at remembering to have regular breaks whilst I’m at work, which makes my brain do what it needs to do to get through the day.

Thankfully, my job is varied enough that if I’m struggling to concentrate I can put something down and work on something else until I’ve had a break.

Unfortunately, when you’re studying for an exam, particularly an advanced one like the one I have next week, easing concentration issues through variety isn’t easy. This means I’ve had to take breaks on a more regular basis. Progress is slow when you have to take a fifteen minutes of every hour as a break, which in turn makes concentration even harder because you’re worrying about how much you still have to learn!

So, it’s safe to say I’m looking forward to getting home next Friday and taking a really long nap!

In other news, just as I was hitting a wall during my run this morning I got a notification on my watch that I’d had another donation. It was anonymous, so if it was you – thank you! Every single donation goes straight to Headway and supports their incredible work. They really have helped me get my life back on track and your donations mean the world to me.

You can donate on my virgin money giving page, or you can share my story on social media to increase awareness of the brilliant work Headway are doing.

 

Ten months later

For most people, ten months seems like a lifetime. Right now, it’s ten months until September, and there are so many things to look forward to between now and then that we can’t help but think of it as a long time away.

For me, the last ten months have been the complete opposite.

I have never been a person to reflect on the passing of time, but I woke up this morning, saw the date on the screen of my phone and couldn’t help but reflect on how quickly the last ten months has gone.

Ten months ago from this very moment, I was waking up from life saving brain surgery. So much has changed for me since that moment, and I’m definitely a different person, but I’ve been thinking about just why I feel like this year has flown by in comparison to all of my previous years.

Perhaps it’s because I spent the first few weeks of the year in and out of consciousness and having so many hallucinations that I don’t really remember January at all, but I think there’s more to it than that. I think it’s because how much I have to do to feel a sense of achievement has changed. This time eighteen months ago, I wouldn’t have considered it a challenge to simply get to my own front door. Now, I feel a huge sense of achievement on the days where I feel like I have enough energy at the end of the day to climb the stairs to my second floor flat instead of using the lift.

Changing the levels at which I feel I’ve had an achievement means that I now notice the smaller things. Having one of those simple achievements on a more regular basis takes away the element of having to wait for the next big life event and time passes far more quickly.

In ten months from now, I’m hoping I’ll have run a marathon and reached my fundraising goal, but they’re far larger achievements than the ones I’m focussing on in the mean time. I’m going to continue to take life day by day, achievement by achievement  and run by run and my bigger goals will hopefully fall in to place.

You can help me with those bigger goals. I’d love it if you could share this post on your social media pages, or make a donation to my cause.

The Magic of Porridge

I’ve been reading up about nutrition for runners a lot in my free time recently. Knowing that energy levels can often be a problem for brain injury survivors, it’s occurred to me that I need to make sure I’m giving my body the right fuel if I’m ever going to succeed at getting over the finish line in April. It turns out that the solution to having lots of energy during a run is porridge.

Lots, and lots, of porridge.

Most articles I’ve read say to stock up on a carb filled meal a few hours before a run. So, I got up this morning and made myself a rather large bowl of porridge. I then crammed in a few hours of studying (3 weeks until exam day. Help.) before heading out for a run along my favourite route; the Thames tow path near my flat. 

After a rough ride through October, I was really worried that all of the effort I put in to training in August and September would have gone to waste and I would have to start from scratch.

Thankfully, that was not the case. For the first time since starting my marathon journey, running today felt really good! I stuck to the distance set for me by my personal trainer in my training plan, but I wasn’t struggling by the end and it’s made me look forward to getting in to the longer runs! I’ve still got a long way to go, but I’m so proud of myself for how far I’ve come since January. 

I’m also really proud of the charity I’m running for; Headway Oxfordshire. At the Action Against Breast Cancer Awards a couple of weeks ago they won Charity of the Year. The award really couldn’t be more deserved and I’m so thankful that they’re getting recognition for all of their hard work. The only reason I’d even consider running the marathon is because I truly believe that Headway Oxfordshire deserve every penny that I’m raising for them. I’m also hoping that I can use every platform available to me to raise awareness of the incredible work they’re doing to support brain injury survivors

At the moment, while I’m not running, or eating porridge, I’m revising (hence the shorter blog post this week), but once my exam is out of the way I’ve got some exciting plans underway to boost my fundraising. Keep reading my blog to find out more in a few weeks time! In the mean time, like, share and donate! I’d love to know what fellow runners do to boost their energy prior to a run. Let me know in the comments!

Swings and roundabouts

When we recover from any illness, our natural instinct is to try and bounce back. To try and get back to normal life as quickly as humanly possible.

When someone has a brain injury, that’s not possible. It takes a little longer to recover, and in some cases, a full recovery isn’t ever possible. It’s been almost ten months since my surgery now and I still struggle with the symptoms of my brain injury sometimes.

After three weeks off sick curled up under a duvet, I returned to my normal life on Monday. Well, post brain injury normal at least. Having not had to concentrate for a few weeks, my brain struggled with the full force return to life. My fatigue hit full force and I found myself napping as soon as I got home from work every day.

Thankfully, after a few days, I had started to readjust to the concept of being awake and the cloud of fatigue had started to lift. I had a day booked off from work on Friday and managed to take part in everything I’d got planned without my fatigue getting in the way too much.

So, whilst this episode of heightened fatigue only lasted a few days, it’s evidence that my brain still hasn’t recovered. The MRI I had while I was in hospital recently showed that whilst everything is heading in the right direction, there’s still abnormalities in the tissue in my brain, and that will take a while to change. I’ve just got to accept the fact that for the foreseeable future it’ll take me a little longer than average to recover from bumps in the road.

In a much more positive turn of events, I’ve finally had my appointment confirmed for my hearing assessment in December. The whole process of initial hearing assessment through to having surgery to place a hearing implant takes around three months, so hopefully my the time I turn 25 on the 1st March, I’ll have my hearing back!

So however bad the last month has been, I’ve got a lot to look forward to over the next few months. I can’t wait to get my running shoes back on next week and get back to training. Donations to Headway are still coming in thick and fast and I’m getting ever closer race day, and my fund-raising target. My health keeps throwing spanners in the works, but I can’t wait to cross that finish line!

Amy

 

My support network

Earlier this week I was sorting out my kitchen cupboards. Such a mundane thing to do, but it really got me thinking. I’ve got to the point in my journey where thankfully I only rely on a few tablets a day to keep me healthy. The supply that I collect once every three months fits neatly in to a small portion of a shelf in my kitchen.

Tablets

While the sheer quantity of tablets I’m taking appears daunting at first, it’s a far cry from the 3 self prepared intravenous drips a day I was on a few months ago.

As a society, we constantly assess our lives based on our current circumstances, but I think my biggest learning point over the last year is to always make judgements on our lives with hindsight in mind. If you look at the stack of tablets in my cupboard it looks pretty horrendous. If you look how far I’ve come since I was lying on an operating table in January though, it doesn’t look nearly as bad.

Looking back at how much my life has changed in the last year has also made me realise how some things in my life have remained constant and how incredibly grateful I am for that.

When I was first diagnosed with depression last year, the first people I told were my family. They were incredibly supportive, and their support has been unwavering ever since. Whether it’s been staying up late with me while I prepare a dose of antibiotics, or driving me to hospital for appointments on a regular basis, my family have been nothing short of incredible.

After my family, I told my employer. Once again, I was met with nothing but support and that support has been continuous ever since. It’s so reassuring when I’m ill to know that I can have time off and still have a job to go back to. Even when I’m away from the office, the outpouring of well wishes from my colleagues makes me sure that I’ve picked a good place to work.

Finally, I started telling my close friends. I count myself very lucky to have several groups of very close friends. When I first ended up in hospital, I got daily messages asking how I was doing from almost all of them. When I mysteriously stopped replying on 20th January, only to reply three days later with ‘I just woke up from brain surgery’, the support went up a notch and hasn’t stopped since.

Having such a fabulous group of people in my daily life has made even the most bleak of days in terms of my health so much easier to deal with. However horrible my journey so far has been, I’m glad that I’m slowly but surely coming out the other side knowing for sure that I’ve got a pretty great group of people by my side.

One person who wasn’t there for me at the beginning of my journey, but I’m pretty sure will be around for a while is my Headway support worker. All of the team at Headway have been fantastic in helping me get back to my normal self and they really do deserve every penny of the £527 I’ve raised so far.

It costs Headway £1,000 to employ a support worker for a month. To date, I’ve had four months of support, so I’m trying to raise £4,000. I’d be forever grateful if you could donate to my cause, or share my story to get me that little bit closer to my target.

I’m a worrier

Those of you who follow me on social media will know that I’ve had a rough few weeks. After a brilliant holiday in Scotland, I returned to work with a fading ear infection. Unfortunately, I only lasted an hour before I was on my way home again, via my GP’s office. He confirmed my suspicions that my ear infection diagnosed in Scotland was not clearing up and sent me to the John Radcliffe Hospital to see the ENT team. What followed was a week of daily visits to hospital, culminating in me being admitted as an inpatient last Friday night. I was dizzy, feeling sick, had earache and the most awful headache.

Thankfully, my stay was far shorter than my previous hospital stay, only a few days this time. I had several head scans and blood tests and all the results came back clear, so I was discharged on Monday after a few rounds of strong intravenous antibiotics.

The difference between this hospital stay and the last was my headache. The ENT consultant said my headache wasn’t typical of a headache caused by a brain infection, but was more like a stress headache. He thinks I was quite literally making myself feel worse by worrying too much.

So, the answer to feeling better is simple. Forget about being ill, stop worrying about the fact that I got another infection and get on with my life. That’s far easier said than done when I have a reminder set on my phone every eight hours telling me to take medication, and when it seems that every item of post that lands on my doorstep is yet another hospital appointment!

Completely forgetting about being ill is next to impossible, but what I can do is find other things to focus on in my life. I have an exam coming up at the beginning of December, so I’m busy studying for that, and I’m really looking forward to getting my running shoes back on next week!

Believe it or not, I’ve even got hospital appointments I’m looking forward to! In December I have a series of audiology tests that will determine whether I’m suitable for a hearing implant. The entire process takes three months, so if I’m eligible, I’ll hopefully be able to hear properly again by the spring!

Whilst I’m not able to train at the moment, donations have still been coming in for Headway and I’m so grateful. I’ve got a few ideas in the pipeline as to how to raise even more money in the coming months, but I’d love it if you could make a donation or share my blog on your social media accounts in the meantime.

Amy x

On setbacks and learning to relax

I’ve spent the last week in Scotland to celebrate my brothers 30th birthday. The first few days of the holiday were spent in the beautiful highlands taking in some spectacular views. Despite the hilly landscape, my training runs seemed easier than usual because I found myself wanting to see what lay around the next corner. Running is far more interesting when you’ve got views like this to keep you occupied!

Unfortunately, the idyllic scottish countryside didn’t stop me having my first major setback since I began my training. On Sunday evening, I started feeling a little rough – headache, dizziness, earache, nausea – pretty much the exact symptoms I was admitted to hospital with ten months ago! I headed to the local doctors on Monday morning – a small surgery that’s only open for two hours a day and has five seats in the waiting room. A very different experience to visiting my usual doctors surgery in Oxford city centre! However small the surgery was, I cannot fault the treatment I received. After diagnosing yet another ear infection, the GP got in touch with my consultant at Addenbrookes to ask about what treatment would best fit in with all the other treatments I’m undergoing. By lunchtime on Tuesday I was drugged up with an extra two antibiotics, taking my total up to 10 tablets and two ear drops every day!

The unexpected health setback put pay to my training whilst away, but that’s okay. I always knew when I signed up to run the marathon that I might have a few setbacks along the way – I’ve written in the past about coping with fatigue and balance issues –  I’ve just got to roll with the punches, do my best and also relax when my body tells me it needs a rest.

So, with that in mind, my family and I headed down to Edinburgh to enjoy the rest of our holiday. With a trip to see the penguin parade at Edinburgh Zoo, a day spent exploring the royal mile and Edinburgh castle and plenty of visits to various shops and restaurants, there was little time to worry about being ill. Although, I am looking forward to getting home for a rest! 

My training has taken a bit of a hit this week, and I’ll take my doctors advice and stay away from my running shoes until my current infection has gone, but I’m going to spend the rest of my recuperation time coming up with more ideas of how to raise money for Headway. I’d love to hear any ideas you’ve got – let me know with a comment below. Or, you can support me by donating to my cause.

 

You don’t look disabled

Earlier in the week I got home to a letter on the doorstep. My brain injury identity card had arrived – a little piece of plastic that lists the day to day struggles I have with my brain. 

The Brain Injury Identity Card is part of an initiative launched by Headway called the Justice Project. Launched in 2017 by Prince Harry, it’s designed to ensure that people with brain injuries are treated more fairly within the criminal justice system. 

People with brain injuries far worse than mine very often have symptoms that lead people to believe that they’re drunk, inappropriate, or otherwise disruptive. We’re not used to noticing people with hidden disabilities, so instead we find a different, more common, explanation for people who behave outside of our comfort zones.

A discomfort that could lead to someone’s arrest.

Having an identity card listing the ways behaviour changes due to brain injury means that survivors can show the card in times of trouble and be treated more fairly.

The card is also useful for brain injury survivors who need a little extra help in going about their day. Asking someone for help that you need because of a disability is hard when their response is “You don’t look disabled”. Having an identity card makes it clear what help a survivor might need and why.

I found out about the Brain Injury Identity Card way back in April, but I didn’t apply for one until August. There was one thing stopping me. My identity. I felt for months that, in applying for an identity card, I was letting my brain injury become my identity.

In some ways, it is my identity. My brain injury has changed so much of me, physically, mentally and socially. It’s changed how I talk, how I walk, how much energy I have, my ability to concentrate, how much time I spend with my friends and family, how much time I set aside for myself and so, so much more. I think you’d be hard pressed to find any person who has gone through as much trauma as I have in the past year without having some major life changes along the way. 

However, what I’ve come to realise in recent months is that my brain injury is not my whole identity, just a small part of it. Thankfully, my brain injury isn’t so severe that it drastically changes my behaviour to the point of acting disorderly, but that doesn’t mean it doesn’t affect me. I’ve written previously about fighting the tide of my fatigue and my problems with balance and coordination

Most days, I can get by without people noticing how my injury is affecting me, but sometimes the affects of my injury are far more noticeable. When I’m having a bad day, I struggle with simple things like stringing a sentence together… but, while my having a bad day might mean I don’t want to go out, I try not to let it stop me. I’ve come too far in the last year to let my disability stop me living my life to the fullest. 

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So, having decided that I can be so much more than my disability, I made the decision to apply for a Brain Injury Identity Card. It’s so reassuring to know that I have that little bit of support in my purse if I’m having a bad day and need a little extra support to go about my day. It fills me with confidence to know that next time I’m struggling with fatigue and need a seat on the bus, the bus driver might be more understanding and come out with something more helpful than “You don’t look disabled”.

The justice project is just one of the many Headway initiatives that improve the lives of brain injury survivors such as myself on a daily basis. I’d love it if you could support my journey by making a donation to Headway. If you’re not in a position to donate, that’s okay – you can still support me by sharing this post on social media. 

Thank you for reading,

Amy

 

Amy’s Hospital Hallucinations

Last week I discussed how my illness altered my thoughts and feelings in the lead up to my hospitalisation. To cast a slightly more cheerful light on things, I thought that this week I’d talk about some of the hallucinations I had whilst I was in hospital. Obviously, at the time the experience was pretty scary for both me and my family. Now, we can look back at some of the crazy things I came up with and have a good laugh.

Before we get to the bit where you all get to have a giggle at my expense, let’s talk science. 

There’s not much scientific evidence as to what causes hallucinations, but they’re a common symptom of sepsis, high doses of morphine, sleep deprivation and inflammation of the brain. 

I was battling all of the above, so my hallucinations could have been caused by one factor, or all of them. We’ll never know!

What we do know, is that some of the things my brain conjured up were downright hilarious. 

So, here are my top five:

1. Automatic Patient Delivery System

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I didn’t just come up with random ideas during my hallucinations. I solved some real-life problems. With all of the scans and specialist treatment I needed while I was an inpatient, I spent a lot of my time waiting for porters to take me to other parts of the hospital. My solution? An automatic patient delivery system. A simple system whereby a nurse types a location in to a keypad next to a patient’s bed, a chute under the bed opens and the patient slides their way to their destination. Think ‘Wallace and Gromit, The Wrong Trousers’ – NHS style. I think it’s definitely something the NHS should invest in! 

2. Hockey World Cup

Next up on the list of craziness: my visit to the hockey world cup. In January 2019 it was hosted in Kimbolton – the Cambridgeshire village that I grew up in. Not only was Kimbolton hosting, but the village had put together a team who had made it to the final! That’s right. Kimbolton vs Iceland in the hockey world cup final. 

Obviously a small Cambridgeshire village hosting such a major international event means that the village needed a little bit of a refurb. For some reason, most of the houses in the village were left as is, but I decided that my Aunt and Uncle’s house would be converted to a Disney store. Just what’s needed during a sports event! 

3. Help, I’m a shopping trolley centaur

Picture this: A standard supermarket trolley with a fold out seat for toddlers next to the handle. A few days after I’d been admitted to hospital I decided it’d be a brilliant idea to climb inside the trolley and I got stuck. My parents came back from getting a cup of coffee to be crying out for help. I think my exact words were “Help, help, I’m a shopping trolley centaur”. When I’d escaped the shopping trolley (in my head, of course), I very wisely advised my parents and the lovely nurse on shift that day “Don’t climb in a shopping trolley if you’re 23 years old. It’s a bad idea. You’ll get stuck”.

4. We’re going to the zoo

sofia-zubiria-UqB0TfIdqNE-unsplashIn at number 4 – a zoo was being built near the hospital! Obviously, the most obvious route to the site of the zoo was through the hospital, so the animals had to go through my room. Not the giraffes though, they were too big to fit! This meant that I spent at least an hour trying to convince both my parents and a nurse to hide from the lions in the bathroom. I was fine because I could hide under the covers of my bed. The lions couldn’t get me there. A few hours after the lions had gone through, I reliably informed my parents that there was a zebra stuck in the room. It’s okay though, my Dad got a tool kit for his birthday, so I asked him to build a pen for the zebra.

5. Teletubbies

By far the best item on the list is my visit from the Teletubbies in the middle of the night. For those readers not from the UK, the Teletubbies are four characters from a children’s television programme of the same name. They are called Tinkywinky, Dipsy, Lala and Po and they all have different shaped antenna sticking out the top of their heads. I loved the programme as a child, but as an adult, they’re kind of creepy! 

This hallucination happened in the middle of the night quite late on in my illness. I was ill enough for my Mum to be staying with me. I thanked her for keeping me company by waking her up at two in the morning by screaming “Don’t do that to Po!” at the top of my lungs. When asked what was wrong, I explained to my Mum that the other three Teletubbies were being mean to Po. They had frog marched her in to the room and threaded a pole through the hole on her antenna. They had then wedged the pole between the floor and the ceiling and started spinning her around the pole. Very rude if you ask me!

These are my top five crazy moments, but that’s definitely not the end of it. I spent most of January telling anyone who would listen about other things happening in my head. I had a midnight tea party with the Queen, a visit from Nick Knowles, took a ride on a boat and bought a submarine just so I could see a polar bear. The craziest thing of all? 

I survived.

I’m incredibly lucky to be sitting here writing this post and I count my lucky stars every day that not only am I almost back to being healthy, but I’ve found support from Headway. I’m still channeling my inner crazy-kid by running a marathon less than eighteen months after such a life changing illness, but it’s totally worth it. In the three weeks since I launched my fundraising appeal I’ve raised £500 which will go a huge way to helping other brain injury survivors. I’d be forever grateful if you could make a donation today to get me that much closer to my fundraising goal. As ever,  it’s okay if you can’t afford a donation. You can still help me on my journey by sharing 26 Miles from Brain Injury on your social media accounts. Just click one of the little buttons at the bottom of the page.

In the coming weeks I would like to write an ‘Ask the Audience’ style post. I’ve committed to writing a post every week, so I figured I might as well write about something you lovely people want to know more about! So, ask me a question. Whether it’s about my mental health struggles, my hospitalisation, my treatment since discharge or some other completely unrelated thing, I’m all ears!

Thanks for reading,

Amy