Diabetes Wise

Real People Sick

I think it was Allison who coined the phrase "Real People Sick", meaning illness that people without diabetes get. *EDIT* The term actually comes from Kerri. See here for more. 

I'm "Real People Sick".

This is coming to you from my bed (thank you wireless network) where I've been tucked up for the last hour and a half or so. I've got a throbbing headache, fever, runny nose, aching neck and a nasty, hacking cough that makes me feel as though I'm coughing up knives. To cap it all, my eyes won't stop streaming and so swollen that I look as though I've been crying for a week.

So I've beaten a hasty retreat to bed (at 7.45pm!). I've taken paracetamol for the fever, and something a little stronger for my headache. I've got a two litre bottle of water, straight from the fridge, a bumper box of tissues and back-to-back re-runs of Friends on TV.

But that is where "Real People Sick" ends. Because even when I'm "real" sick, I'm still chronic illness sick too.

My blood sugars are behaving like... well the point is they're not behaving. Amongst all those 'ordinary' supplies, I've got my meter for frequent testing and juice for bounce-back lows.

And then there is the reaction to another number. The temperature number. When I checked my temperature earlier and saw 39.2 (that's over 102 in Fahrenheit) blinking back at me, my first thought was that all the shaking I'm doing might not be shivering after all. For someone with Addison's disease, it's definitely time to crack out the extra steroids.

And later on they'll do their own number on my blood sugars.

I feel truly awful.

I want to crawl in to a hole for a very long time. But unfortunately I need to keep checking my blood sugar every couple of hours.

So much for "Real People Sick"!

The Road Taken

This month marks ten years since my interviews for a place at dental school. It was a dream I cherished and worked towards. It was what I really, really wanted to do. Although I had a very clear idea of where I wanted to end up, I applied to five schools, to give me the best chance of getting a place somewhere. Because anywhere doing dentistry was better than nowhere at all.

My first interview was in Birmingham, and I was offered a place. The second interview that came up was in London - where I wanted to be.

I remember the day clearly, from getting on the train to ending up in a McDonalds, the closest place to hand, drinking regular coke because my blood sugar was low but I was too nervous to eat anything, including glucose tablets. I remember meeting my brother, already a student in London, afterward. We went up to Regent Street, where the Christmas lights were in full blaze and I remember thinking how this was the city I wanted to call home. I didn't want to be a faceless stranger in the crowd, I wanted to be a Londoner.

Two weeks later, a frosty morning in early December, I was woken up by my parents waving a letter bearing the university stamp. I didn't waste time in considering whether the envelope was thick enough to contain an offer. Without even getting out of bed, I tore it open.

And that was the first moment that shaped my future.

The offer of a place at my preferred school meant the interview trail was over. The grade offers I might get elsewhere could not reasonably be expected to be any lower, so I withdrew my outstanding applications and accepted my London offer, examination results pending.

The next decisive moment in shaping my future came on August 20th 1998, the day I received my Advanced Level Exam results. For the first time in my over-achieving life I didn't care about the actual grades. All I cared about was meeting the grade requirements set out for my dental school place.

My dad summed it up nicely six years later when he recalled how I'd phoned him and, rather than telling him my grades, I'd simply said "I'm going to be a dentist."

In retrospect, it's a poignant statement. I didn't have any idea on that day how hard it would actually be to get there. I had no reason to. I'd never struggled academically and although I'd been ill, it had somehow never got in the way of me achieving what I wanted to.

Now, ten years on, I can't help but reflect on the path I chose. The road I took.

Not dentistry.

I love dentistry. It is a job that you can't do well, if at all, if you don't love it. It's too intense, too involved. And I never did really struggle, either academically or clinically, as a dental student either. I emerged from six years of university with an enormous debt, and two degrees. I don't regret any of that.

What I wonder about is how life would have turned out if I'd not chosen London.

Don't read this wrong. I also love London. The seventeen year old on Regent Street is still alive and well inside me. I adore this city, with all its history, its winding streets, its icons of architecture and transport. I'm so glad to have called this place home for so many years, and enjoyed all the opportunities this nation's capital has to offer.

But this month also marks eight years since my life changed.

Being diagnosed with epilepsy had a profound effect on my life. Frequent seizures bring real life to a stand still. I became afraid to go out. My seizures brought out the very worst in some other people, whose lack of understanding and treatment of me drove me deep in to depression. The cruelty I endured is difficult to think about. Impossible to put in to words.

But most of all, I could no longer be sure of becoming a dentist.

I'd taken it for granted, since the moment I opened the brown envelope containing my exam results in my high school car park in August 1998. The thought of not achieving my dream, of failure, was devastating.

You know the ending to this story. You know that I did make it through.

It's looking back on the struggle, all the extra effort, the cruel treatment I received, that makes me reflect on the path I took.

If I'd gone to study dentistry somewhere else, what might have been? Would I have avoided catching meningitis, and so avoided developing epilepsy? I know I can't answer that. No one can. But since, unlike with diabetes, I can trace my diagnosis back down a path of specific turning points, it's natural to question it.

Epilepsy is a tiny part of me now. It remains engraved on to my medical ID bracelet. I still don't hold a driving license.

I still meet people who question. Critcise. Discriminate.

The stigma is still firmly attached.

What if? I can't help but wonder...

 

Returning to the Scene of the Crime

Today's post, for NaBloPoMo, was always going to be a challenge to write, not only because I rarely, if ever, post on a Saturday, but also due to a hectic schedule. I had a full work-length day attending a course to update my knowledge and kills in sedating patients followed by plans that would take me directly out this evening with no time to stop to make much of a blog post.

What I wasn't really expecting was to hit on a subject I wanted to write about that in itself would present such a challenge. I've been mulling it over on my journey home, and can only hope I don't come across sounding ridiculously emo.

The course I was attending was based at Queen Mary's, University of London in Mile End. QMUL is the university attached to the Royal London Hospital at Whitechapel, in which I spent some time last year, about 10 minutes away.

It only struck me when I was waiting for a train on the northbound East London Line underground platform at Canada Water, that this is the first time I've used the East London Line since that day. It's not hard to let to let 16 months pass without using this particular line. It's currently the shortest on the network, serving just seven stops between Whitechapel and New Cross. But realising that this is the first time I've re-made that journey made my stomach lurch. I can't find the words to describe it properly. It made me catch my breath for a second. It just made me feel weird. I knew it was irrational a daft. After all, it's not like the day was going to have the same ending. But sometimes you just can't help the way you feel.

Arriving at Whitechapel station, I found myself hot footing it up the stairs to the District Line platforms above and jumping on a train to go one single stop eastbound to Stepney Green. True, I was several minutes closer to my destination, but it was beautiful, clear and sunny November morning, I was running a little early and the extra walk would have made a great start to the day.

Instead, I found myself in Whitechapel station, my heart pounding crazily in my chest and totally unable to accomplish the simple task of walking out through the ticket hall. I found myself physically unable to revisit of the scene crime, of which only a brief and sanitized version is really described here, the truth hidden and excused by my unconsciousness at the time.

I don't ever have much reason to visit Whitechapel these days and could quite probably go through the rest of my life avoiding it.

But sooner or later, I need to make myself go back there.  Life after all did go on, no matter how close it came to being a different story.

Reduced to Words

"Diabetes, poorly controlled. On insulin"

"Epilepsy. Suffers grand-mal fits."

These were phrases that jumped out of patients' records at work today. Records not made by me, I hasten to add.

These few words, accurate as they may have been, really told me nothing about the people they referred to.  Beyond the fact that there is no mention of what "poor control" means or why the person with diabetes  has it; beyond the fact that "grand-mal fits" is a somewhat out-dated description; these words seemed like such an tiny, unimportant entry of things that no doubt shape the people they describe enormously.

They do nothing to justify the impact of diabetes on that person's every waking decision, from what to eat to how much to exercise. They do nothing to show the time and effort that person may already be putting in to improve their control, or the fear of complications that may grip them.

A short description goes no way to defining how the risk of a seizure can impact on a person's life, the scars on their face a much starker reminder of the force of a condition such as epilepsy.

Reducing a life changing medical condition to a few words is a near impossible task and at the beginning of a month I'm dedicating to the writing of words, it struck me what a poor job words sometimes do.

Going for the Jugular

Today I went for a hydrocortisone day curve analysis, to check whether the levels of steroids I'm taking for my Addison's are correct. This is the first of a number of protracted tests I'm having over the next month or so, to check up on the Addison's and my waning pituitary function. My body certainly failed the 'endocrine' part of the 'how to be a great human body' course!

I have notoriously difficult veins to find for blood tests and cannulation. I've known anaesthetists to curse in frustration in the face of my tiny, wiggly veins and a junior doctor to hurl his equipment down in defeat.

So getting the cannula in my vein was the only part of today I was dreading. It turned out to be with good cause.

Several attempts by several members of staff later, I was getting anxious. This is a long test that I wanted to get underway, and having taken a day off work specifically there was no way I wanted to abandon the attempt.

"We'll have to go for the jugular then" said the doctor attending to me.

I'm not squeamish - I'm a dentist after all. And I'm not even unduly squeamish about procedures carried out on me - I've even let them use my feet before. But somehow the tears were escaping before I could even fully get my head around the idea.

Having a three inch needle shoved into your neck is, I can confirm, not the most pleasant experience in the world. But two fantastic nurses and a very gentle doctor make all the difference in the world.

And here's my reminder:

The good part? It didn't have a negative effect on my blood sugars and neither, so it seems, did a day of lying in bed! (The upper line = 9mmol/162mg/dL, the lower line = 4mmol/72mg/dL. Yes, that is my MacBook the pump is resting on, and yes it needs a clean!)

The bad part? I've got a repeat performance to look forward to in three weeks time.

I Missed It... Because I Was Missing the Point

D-blog day: I missed it.

And every other day for the past two months as well.

I've been busy doing a whole host of things, many of them really exciting and positive. But underneath it diabetes has been wearing me down. For some reason I've engaged in battle, a battle I know I can't win because I know diabetes won't just go away, silently and alone without sharing my feelings here or anywhere else. I've been wallowing in a loneliness not borne of having no one around me, but of having no one to share diabetes with.

I know, I only have myself to blame for being so daft!

I lay in the darkness on the floor of a house in Falmouth, Cornwall, last weekend, listening to the slow even breathing of sleeping people around me. I wasn't sleeping as inside me a tide of rage bubbled angrily and excess glucose coursed through my veins. The anger felt so strong that I physically placed my hand over my mouth to suppress the scream that threatened to release my pent up fury. Fury at the blood sugar of 17mmol that wouldn't come down. Fury that diabetes had had to repeatedly get its voice heard during a weekend away with friends that should have been simply fun and carefree. And all the while a guilty little voice was picking away inside me, nagging that the coke with those Vodkas wasn't diet, that maybe I shouldn't have had a slice of birthday cake despite it being the 30th birthday of a very good friend, that maybe I should have made the time to test my blood sugar just a little more often. I take my eye off diabetes for just one moment and it fights back, showing me who is boss.

Several weeks back I forgot to take two hydrocortisone tablets in a row. Forgetting just two doses of a tiny, bitter, white tablet was enough to send my blood sugars so low that I passed out on the number 42 bus, and was found by the driver at the end of the line, slumped in my seat with my clothes drenched through by my own sweat. The lack of cortisol had sent my blood pressure so low that the paramedics couldn't read it. I take my eye of my medications for just twelve hours, and my body gives up.

And all the while I can't help but feel desperately frustrated by, and even resentful of, people around me. The people I encounter who have diabetes themselves, and should 'get it', but have no care for their own health and are dismissive of my attitude to mine. The friends and the people who just simply don't get it. And perhaps worst of all I'm frustrated by those who have a little knowledge. These are the people I find myself hiding my blood glucose test results from, even when they show an interest as I prick my finger, because they know enough to understand the result, but not enough to understand that highs and lows happen. That they aren't all down to something I did wrong. They aren't all my fault. So I hide my results and most of all, I hide my feelings from these people that I fear might judge me as a failure.
Because I'm also tired of the educating and telling.

The more lonely I have felt in dealing with diabetes, the more I have retreated away from the D blog community. It is easy to find excuses. Like: The simple excuse of "I don't have time right now". Like: If I don't want to think about diabetes, then I'm sure not going to sit down and write about it. And rather like with recording of blood sugars, the longer I've gone without blogging, the harder it has been to return to it.

I've been blankly staring past the obvious truth of the matter: That all the things I'm most frustrated about and that drive my sense of isolation and loneliness don't apply to the D-blog community. Because you are the people who do get it.

The very people I shouldn't be hiding from.

I may be on a different continent to the overwhelming majority of D-bloggers but, despite my occasional feelings of isolation due to the lack of other UK bloggers and the general disinterest and apathy that represents to me, there aren't really any borders, boundaries or oceans where blogging is concerned. We're all one family, and I should have been here saying that on November 9th.

I guess it is my testament and tribute to the group that I have faith that despite my prolonged absence not only from my own blog, but also from the reading of and sharing on the blogs of others, I will still be welcomed home.

This is a community that deep down we'd all rather not belong to, but if we have to have diabetes at all, I'm so thankful that it exists and that there are so many others out there who always understand and frequently share my feelings.

Adventures in Hospital

Diabetes-wise my recent hospital stay was interesting.

I slipped back into a cycle of intractable lows, some causing seizures. On admission I was wearing the Guardian RT with a four day old sensor. Since the sensors need to be refrigerated, I obviously didn't have a spare with me. Given the shaky state of my diabetes control, given that severe vertigo and photophobia made it impossible for me to test my own blood sugars or read my pump screens, and that relying on hospital staff the test my blood sugar frequently enough made me feel uneasy, I wasn't going to take it off. I was grateful to the descending tone that accompanies low alerts to warn me of appraoaching problems without me having to even look at the monitor. I was grateful for the warning it gave me to ask for help when I needed it. I managed to make the sensor last 11 days, and only took it of at that point because I was having an MRI scan.

I was blessed with a couple of great nurses, who I quickly trained to read the numbers off the Guardian to me, and I was even able to talk one of them, from memory, through programming boluses and basal changes on my pump. He listened carefully - wanted to learn and help me make it work. He gave me all the time it needed.

Some of the staff were not so great. None quite match up to the idiot nurse I had when recovering from my ankle surgery in June who refused to give me glucose powder dissolved in water when I had a blood sugar of 2 (36) because "you're diabetic and sugar is bad for you. It will kill you." I kid you not. Yet he was quite happy to give me other things which contained sugar and went on tell me that he had a degree and knew what he was talking about. I retorted that I have two degrees and in future would he not call be by my first name but address me as Dr. follwed by last name (a title I am legally entitled to use, although in practice rarely do). That eventually shut him up.

This time around was not quite so bad, but almost.

On my last night in hospital, a night that I hadn't wanted to stay, but had been coerced into doing so by my diabetes consultant I was utterly exhausted. If there is one thing a hospital stay isn't, it's restful. I was relying on staff to check my blood sugar every two hours as requested by my consultant.

It didn't happen.

The last check performed was at midnight, which as around 4 (72). No one woke me and told me that or suggested that I eat a snack.

I woke with a pounding headache at 6.30am and checked the blood glucose log sheet to find that no tests had been done. A quick test with my own meter revealed 2.1 (36)

This is where it gets good.

I called a nurse and told her the number. She dutifully wrote it down and turned to walk away.

"Erm... I need some glucose." I said

"Oh. You want some Lucozade."

This was hardly a matter of want. This was definitely a matter of need.

She reappeared a few minutes later. "We've run out."

"OOO...Kay. Could I just have some sugar in water, or some glucose gel or something?"

"Hold on."

A couple of minutes later she's eventually back with a tube of glucose gel, which I swallow. Ten minutes later my blood sugar is cruising back up and I pull the sheet over my head and go back to sleep.

It seemed this little event had at least alerted everyone to the fact that they'd forgotten to check on me through the night. Around 45 minutes later someone was shaking me awake.

"Caroline... Caroline. We've got you some hot chocolate. You've got to drink it."

I thought I was in some weird dream. At half past seven in the morning this strange person is leaning over me with a small cardboard cup of steaming chocolate telling me that I must drink it. I was having trouble making that compute.

It turns out that on re-testing my blood sugar as I slept, they'd found it had dropped back down. Now out of not only Lucozade but also glucose gel, their solution to the problem was to make me drink hot chocolate.

What?

There were many more sensible solutions to this. Borrowing Lucozade or glucose from a neighbouring ward, dissolving sugar in water or even just bringing me my breakfast which was due round pretty soon anyway.

But hot chocolate?

One of those small cups has around 5g of carbs in in. It is boiling hot, necessitating at least a ten minute wait until you can drink it, and when you finally do the fat in there retards the absorption of the meagre carbs anyway.

Even a little hypoglycaemic I could work this out. And I was stunned.

Later that morning when my consultant paid me a visit, I guess I took it out on him.

He's a lovely guy. In fact he has only just become a consultant, and I have known him for a long time wile he was still training. I have a lot of respect for him.

"I would have been a whole lot better off at home last night" I said. "I can give you a list of reasons why."

I told him about the failure to check my sugars. How if I had been at home I would have had the benefit of the Guardian RT alarms, plus setting my alarm clock myself for every couple of hours. I told him how I would have had several sources of glucose, plus long acting carbs available. How I could have eaten a bedtime snack. I told him how being able to eat decent food - food that I wanted, when I wanted it - might be very helpful in preventing these lows anyway. I told him how I would scream if one more member of staff referred to my pump as a sliding scale, and asked me when I would be coming off it - as if returning to injections signified something good. I told him the bottom line: now past the acute illness, I would feel safer at home.

He listened very patiently. Let me tell it all to him.

Then he thanked me.

He thanked me for highlighting that there was still a huge misunderstanding about pumps within the hospital. He thanked me for bringing the ridiculous hypo treatment protocols to light. He agreed that it simply wasn't good enough. He even said it would be better if the hospital was able to get RT sensors for patients who come in wearing the RT, even though they are currently rare. He agreed the RT was good for me right now, which is a breakthrough where it is still largely greeted with scepticism. He took out a piece of paper and carefully listed the concerns.

He promised to address them. To try and make something change. So that if I return, I might feel a little bit safer in my bed.

I know he faces a huge task to try and effect change, and I won't be surprised if it doesn't happen. But his willingness is what counts. The fact that he always listens, treats me like an equal even when I'm losing it with frustration about diabetes and doesn't judge me for it.

That is what I call a star. I just hope he knows that I think that.

 

Home From Hospital; Or is Hospital Becoming My Home?

I think the title says a lot.

Maybe the details don't really matter.

Or at least the details of what happened to earn me another nine day stay in hospital. Suffice it to say I was very ill.

The deatils of how I feel about it?

I guess they matter to me.

I'm frustrated by my continual ability to succumb to illness, to completely lose control and to need to depend on others to fix it for me. I'm frustrated with a body that keeps letting me down and making this happen.

I know.

It's not my fault.

There is nothing I could have done to manage this alone, or to prevent it from happening.

But that doesn't make me any less depressed about the whole thing.

A Free Gift

More than twenty years on, the autoimmunity that gave me diabetes has decided to reward me for my loyalty with a free gift: Addison's Disease

And so ends ten days of nightmares.

It began on Saturday July 1st. England lost to Portugal on penalties in the Quarter finals of the World Cup, but it was still a good day. I'd met a friend after the game for a single drink and something to eat. I was on my way into Whitechapel Tube Station on my way home, probably around 11pm and alone, when the world switched off.

I'd like to tell you what happened, but the truth is simple: I can't because I don't know.

I've filled in some gaps from information given to me by the paramedics. Witnesses said I'd simply stopped, fallen to the floor and started having a seizure. Certainly, I'd bitten my tongue, as I woke up with blood in my mouth and smeared across my face.

The paramedic who attended first tested my blood sugar at 1.2.

1.2 mmol/l

That is 22 mg/dL

A few minutes before, I'd been walking (ok, on crutches) along the street feeling fine.

A few minutes before that I'd given a friend a quick hug and said goodbye.

And perhaps ten minutes before that I'd tested my blood sugar at 6 mmol/l (108)  with no insulin active in my system.

It didn't make sense.

Certainly not then, when I came round to a sea of strange faces asking me questions I could neither understand nor respond to. Not a few minutes later as I struggled to articulate simple words on my arrival at the A&E Department of the Royal London Hospital (fortuitously located almost directly opposite Whitechapel Tube.) And it still didn't make any sense to me around half an hour later when the post-glucagon vomiting started.

It still didn't make sense the following morning, when I realised my blood sugar had never at any point, even after Glucagon, been recorded at higher than 6 (108). Overnight I'd had less than a single unit of insulin and still my blood sugar remained within range.

It had been late when I'd arrived at the hospital and I had accepted that I would be better to stay until morning but fully expected to have recovered by then and to go home to figure out the cause of my spectacular low. I didn't expect to feel so absolutely horrific. To be unable to stand up without the room spinning, to feel sick and to have so much unexpected pain from my still plastered ankle.

I've had bad hypos before.  I've had seizures before. I've had Glucagon before. But I've never felt this bad afterwards before.

The one consolation seemed to be that I'd been cured of diabetes.

Running basal rates of around -80% (by which I mean 20% or normal ratesl) I was still almost continuously hypoglycaemic. My own Diabetes Specialist Nurse (DSN), who is based at a different hospital, has told me since that the doctor treating me at The Royal London had actually contacted her on that Sunday and asked if I really did have Type 1 Diabetes!

I proved a problem to the diabetes team at The Royal London. They fully admitted to being unfamiliar with pumps, as they don't support pump patients. I've also never been a patient there before, and they had no idea of my diabetes or general medical history. I wasn't it much of a state to help. Tired, frustrated and permanently hypo despite continuous carb consumption, I just wanted to go home, regardless of what the consequences of doing so might be.

I spent last Monday alternately lying flat to reduce my dizziness, or being violently sick. I had to push the staff to get my plaster cast removed to check for a wound infection, as my whole leg burned with pain. At one point, I had an intravenous dextrose infusion and my pump switched off, yet was still recording blood sugars of less than 4 (72).

By Tuesday my leg had proved to be fine, the vomiting had diminished and I seemed to be able to avoid hypoglycaemia by taking just 0.05 units of insulin per hour (Down from an average basal of 1u/h.) Seemingly out of ideas for what to do to better stabilise me, the team at The Royal London let me go, in order that I could return the following day to my own diabetes team.

I spent Tuesday night waking to the alarm every 90 minutes to check my blood sugar and eat sugar as required. By Wednesday lunchtime I was exhausted and my blood sugar had slid back to 1.6 (29) with no symptoms at all apart from being sick, which had been happening regardless of blood sugar level anyway! I remember clearly lying on my bed trying to swallow tubes of glucose gel without being sick. I remember panicking because I knew I was going to be late for the appointment with my diabetes team, but I don't remember clearly the details of the journey to the hospital, (or, sadly, how I came to lose my Oyster Card)

When I arrived, I sat in the waiting room, resting my head on my knees as the only way to stop the world from turning around me. My name was called by the lab tech who takes bloods, but by the time I'd stood up, she had disappeared. I reached the front of the waiting room before falling forward....

It might seem mad, but when my consultant, seated but stooping to reach eye level with me as I lay on a couch, patiently and compassionately explained they would have to admit me and that there was no way I could go home, I started to cry. As terrible as I felt, I just didn't want to stay in hospital again. But if I'd gone home, who knows what might have happened.

Over the next 24 hours, I got through around 3 litres of Lucozade and 8 tubes of glucose gel, yet my blood sugars, tested hourly by staff, remained steadfastly low. At times I remained below 2 mmol/l (36mg/dL) for several hours at a time. What amazed nursing staff was that I felt exactly the same when my blood sugar was 1.5 as I did when it was 5.5. The same was, unfortunately, terrible, but I definitely had no indications of actually being so low - unsurprisingly I guess.

On Thursday afternoon, the SHO came to see me and explained that, as they'd suspected, my adrenal glands are no longer working correctly. My morning cortisol level that day had been less than 40, where normal is 200-250. Cortisol is a major antagonist to insulin and my persistent hypoglycaemia, as well as my other symptoms, were down to the lack of this hormone.

The SHO touched my arm and asked if I was ok.

I didn't, honestly, know how to answer that question.

I was relieved to have a reason for the way I had been feeling, and for the hypoglycaemia. At least it would be corectable, now we knew what was causing it. And at least Addison's is relatively strightforward to manage.

But who wants another chronic condition? Who wants something else to squeeze onto their medical ID tag, more tablets to take, something else to think about during illness or travelling?

Not me.

Damn you autoimmunity. I didn't want your bonus gift.

This Post is Brought to You by The Letter E

In November 1999, as a 19 year old who’d just begun my second year of dental school, I woke up in the Accident and Emergency Department of St Thomas’ Hospital with the mother of all headaches. All I think I know for certain is that had I rolled over and pulled the duvet over my head that morning, as I desperately wanted to do, I probably wouldn’t be writing this now. In fact, none of the last six and a half years would have happened for me, because by the time anyone had found me in my bed, I’d probably already have been dead. Claimed by meningitis.

There are details that don’t matter much now. Like how they struggled with a lumbar puncture because I have “unusual spinal anatomy” and by the time they drew fluid I’d already been being pumped with antibiotics for 20 hours. The fact that, because I perked up, and they were short of beds, they sent me home before they had confirmed the diagnosis. The fact that if I hadn’t been taken almost straight back to (a different) hospital, and fought hard to hang on, I also wouldn’t be writing this now.

There are details that have a small amount of relevance now. Like how the number of antibiotics they used led to C. Difficile, and my lower GI tract all but stopped working. I got reminders of the damage done for some time, but they are rare now.

Then there are the things that really matter, matter to this day and likely will matter always.

After I’d fought off the infection that threatened my life, I thought I’d won. I didn’t know straight away that I’d come out the other side irrevocably changed.

A change defined by the letter E.

E for Epilepsy.

You see, for me, seizures aren’t all about the blood sugar level. They are there as a threat, albeit a small one, creeping behind me every day no matter how high or low I am, ready to pounce if I forget a dose of medication or fail to get enough sleep. They stop me from being able to drive a car, and they cause no end of narrow-minded prejudice. Like diabetes, epilepsy does not define me, but it is, and always will be, a part of me.

I know what you are thinking.

You’re thinking: how can someone with epilepsy be a dentist?

If you think for even a moment that I haven’t asked myself that question a thousand times, then you’ve another think coming. And if you didn’t think it yourself, maybe you should have. It is a valid question. But let me explain.

First and foremost: My epilepsy is under control. I have occasional seizures in my sleep – which is why I’m still barred from driving a car, but I have ben assessed and passed as fit to work as a dentist.

Secondly, let me clarify that not all seizures involve people dropping to the floor without warning and thrashing around, as often portrayed in the media. Some of my seizures finish up that way, but not all, and most of those that have were preceded by an aura. Most seizures are actually far scarier for me, forcing me into a kind of personal hell of distorted sound and skewed sensation, but having little impact on people around me.

Had things worked out differently, I’d probably never actually have become a dentist. If I’d developed epilepsy a couple of years earlier, for example. However, although I had meningitis at the beginning of my second year of dental school, I only had a couple of seizures that year, which were attributed to my brain healing itself. It wasn’t until I was well into my third year of study that they really started, and I finally got a formal diagnosis of epilepsy shortly after my 21^st birthday. The fact that I was so far through, and convinced by supportive friends, family, tutors and neurologist, I made the decision to go for it.

I took a year out of clinical dentistry to study for a basic science degree in pharmacology and biomaterials, and committed to getting the seizures under control. Unfortunately epilepsy is not like diabetes. There is actually very little that you can do to positively influence the outcome. You can take the meds as prescribed, and identify and avoid triggers, such as alcohol, stress and lack of sleep, but otherwise you are at the mercy of your condition. Of course, this also has benefits. Now that my seizures are under control, I need pay very little attention to epilepsy, something that will never be true for diabetes.

That is not to say that it is, or was easy. I was unfortunate enough to develop encephalitis during my ‘year out’ which has many similarities to meningitis, and can causes your brain to swell until it crushes itself inside your skull. I found myself fighting all over again, and this time was left with peripheral nerve damage, caused either by the infection itself or the bungled attempts at a lumbar puncture, that meant I needed to work hard at remembering how to put one foot in front of the other and walk.

And worse than that were the prejudices and stereotypes perpetuated by narrow-minded people, which have continually both astonished and appalled me. Whilst I have no doubt that it was the countless supportive people who really got me through, it was equally the many cruel, thoughtless people who nearly finished me off. People who told me that I wasn’t fit to live a normal life, never mind be a dentist, people who laughed at my seizures or said they were exaggerated… the memories still hurt. Sadly epilepsy still carries a great stigma, and is nowhere near as well accepted as diabetes usually is. Ignorance is probably a major driving force.

Epilepsy also threatened to destroy me emotionally in way that diabetes never did. Perhaps because I don’t remember a time before diabetes, but epilepsy was something completely new and life altering that I had to adapt to. Perhaps because I had diabetes under control before I got to wanting to do things that out-of-control diabetes could interfere with, but epilepsy came along and took away my driving license and threatened to take away my career plans. Perhaps because, like the stories that emerge from acquaintances on discovering you have diabetes, about relatives and friends who have lost limbs and gone blind, there are stories about epilepsy – of people being locked up in institutions, of people unable to live alone and function normally. And those stories were much harder to brush off when my own epilepsy hadn’t yet approached ‘controlled’.

Epilepsy will, as I said at the beginning, always affect me. Even if I never have another seizure, I am unlikely to be able to stop taking medication. Even if I never have another seizure, I will still in certain circumstances, be stigmatized by having had epilepsy. That is what lay behind the Open Letter  I published last week. That was railing against somebody’s prejudice based on information they obtained from an unidentified source from the time before my seizures were controlled.

Given the choice between epilepsy and diabetes? I’d find it very difficult. Each has given and taken away different things. Epilepsy has a greater stigma, but for me, is much easier to control. Diabetes… well, if you’re reading this, chances are you know the challenges that poses. The two things together are a unique, and just occasionally explosive, mix, but at the end of the day they make me what I am.