Always on my mind

Sorry for those who know me well who will find this post a little repetitive, but I want to spew a load about something I may have referred to previously, albeit in a jokey way.

And I may sound like I'm taking the piss, but it's that or feel like I am feeling right now so I will pick jest every time.

Five years ago this August, I almost died.

It sounds tactless that way, but that's the truth, five years ago, in the middle of the summer, I found myself strapped up to a load of machines and drips, fighting to stay alive.

I'd been feeling rough for a while, but I thought it was a pregnancy thing. I'd go out rarely, but when I did it took me a few days to recover. I barely drank at these things, because I didn't want the days after in bed.

It got really dangerous at one point, I worked 4 evenings a week and in between I either slept, or fought off sleep to keep an eye on my son, who was starting to crawl. I could barely stay awake to make sure he was safe. It took me about half hour to come round enough to change his nappy or give him his food. I wasn't really functioning.

And I was hella moody too. Like, a week before I got hospitalised, we went on holiday, where I spent the whole week trying to sleep and rowing with my parents because they thought I was just offloading my son on them (there was an awful moment where he hit his head on the coffee table and I couldn't move to see he was okay. Mum was fussing over him and alternating between that and 'what is wrong with you?' like I didn't give one about my kid. We know better know, but at the time ...) and I honestly couldn't see what kind of demon I was being.

And then one day, I started yakking my guts up. I'd passed out on the bathroom floor and the next two days were a vom-fest, until my parents thought maybe I had a stomach ulcer or kidney stones or something and took me to a&e. I spent maybe two minutes in the waiting room before I decided foetal position on the floor sounded much more comfortable than the seats and started sinking down, but mum thought I was fainting and grabbed my sides (read, she basically grabbed my pancreas and liver. The two problem sites) and I screamed just from her touching me ... then was suddenly having blood tests and being given morphine and getting asked a lot of questions about my drinking habits.

Because a 20-something girl who's size 10/12 in the UK just doesn't get Pancreatitis from gallstones, not often. A 20-something girl who's got Pancreatitis is a raging alcoholic normally. But once we established that I didn't drink that much, they booked me in to look for gallstones in the morning. I had an ultrasound and they said my gallbladder was like a tiny sack of gravel I had so many.

And after a couple of days of being in hospital, they started taking more and more blood tests. I've had everything you can, cultures, gases, straight up tests ... the head of haematology worked out that it wasn't meningitis or leukemia like the nurses thought, and came to explain what treatment I needed because my blood was bad, but not much about the problem. I found that out after they transferred me to London.

And look, I'm not saying I'm a complete scrubs nut, but when they tell you you have something that was on scrubs, the incorrect reaction is to tell them you saw it on there and 'the patient with it died'.

It's called Thrombotic Thrombocytopenic Purpura btw, or TTP for short. Your blood clots in your veins and you end up losing blood, but you never bleed. And you're more likely to die from a stroke or multiple organ failure than from completely losing blood. The only treatment is this machine called an apheresis machine, which leukemia patients use sometimes after radiotherapy.

It took me about two weeks to leave the hospital, and the only reason I did is because my son's first birthday was coming up. I wanted to get out for it. I got discharged the day after, so I'm always going to remember that my son's first birthday was in a hospital room, and about five minutes in the local park where mummy sat on a bench because getting to the park wiped her out.

They told me some fun stats in the months and years after my discharge, and I'd like to share them with you now:

-I came pretty close to having a stroke. I'd complained about a sharp headache, and they told me after that my speech was slurred. They upped my physio when they realised (I wondered why I suddenly had to push the nurses about in my observation slots) and asked me dumb questions like, all the time. "Who are you?" "Who am I?" "Where are we?" "Who's the Prime Minister?" "What's the capital of England?"

-There's a possible link between TTP and brain damage. They said it manifested mainly in memory problems, speech problems and reaction times. I can check all three boxes, even now. The nurse at the time was going to set up a test for patients and I put my name down to be tested because there's so little known about TTP that I want to know more and the best way to know how my illness affects me is to be part of the research into it.

-8 in a million people, or 1 in 125000 people suffer from TTP. In the UK, that puts the figure somewhere at 460 in our 60million population. Of those 460, 15 are born with TTP, and get it every few months. 2% get TTP from pancreatitis, either drinking or gallstones. 2% of 460? That's 9. I am one of 9 people in 60 million who has had this. I don't think it makes me special, but I do think it makes it hard to communicate to people just what it means, what I've been through, what I still go through. Essentially, it's an invisible illness, like diabetes or schizophrenia. And people don't always like what they don't see, or don't believe in what's not visible, so to most people I know? There's nothing wrong. The worst is when it's the end of a night shift, and someone asks me a question needing a detailed answer because that's when the effects are at their worst.

-With treatment, 1 in 5 people die from TTP. Without, you don't stand any chance. Equally, 1 in 5 people die from Pancreatitis. I've tried working out the mortality rate of having both, but then I get confused about which way I'm diluting it.

-There's a high percentage of TTP sufferers who have PTSD within 10 years of suffering the condition. This does not fill me with hope.

-TTP is typically an illness for 30-50 year olds. It also has a time limit on it, if you survive 10 years without a relapse, you're less likely to have a relapse. Since I was in my early twenties when this happened, it puts me in the main age frame at the end of my ten years. So I'm still trying to work out if I have another 5, or another 25 more years of worrying about a relapse.

Do you know what sucks the most for me? I worked my ass off the last five years, trying to beat this thing, trying to conquer all the problems it gave me. I've done a lot to try and show this illness who's boss. But it's only now that I'm realising no matter what, this is going to define me. If I'd walked away without any issues, I might have stood a chance. But now I have to get my head around the fact that maybe in the last five years I've done too much and I'm just risking making myself sick again. And I can't even explain this at work properly, because the only time I see my boss is at the end of my night shifts. There is no way to explain how much this is crushing me.