The hippy reflects on 500 days without a major seizure. You’d think he’d be happy about it, but you probably know him well enough to think otherwise. You would be correct.

I hit a significant milestone this week. I haven’t had a major seizure in 500 days. That’s a new record for me, beating my previous record of 361 days. The last time the paramedics made a house call to me is also over 500 days ago.

You might have noticed I used the words “major seizure’. Not having any major seizures is an extremely good thing. I should be celebrating, I guess. 

Are my seizures now well controlled? Sorta. I continue to have occasional partial seizures, both simple, and complex. 

Partial seizures are what trigger my major seizures. Major seizures are my shorthand for tonic-clonic seizures. They’re the ones that can kill you. I haven’t had one since February 2024.

Even though I haven’t had a major seizure in what seems like a long time, I still worry about them. Constantly. The continuing partial seizures don’t help. And as much as I want to believe the big ones are now under control, there’s a part of me that still expects one every day. It limits what I do to a worrying degree. I continue to have a lot of anxiety around the possibility of a new seizure.

The fear itself is not new. I was referred for counselling by my neurologist over a year ago, as my reaction to my epilepsy diagnosis is not uncommon.

I’ve now have had around half a dozen telephone sessions with a really nice psychologist who specialises in epilepsy, over the last 6 months. I was given a choice between 6 sessions over 6 weeks, or 6 sessions randomly over a period of months. I chose the latter.

I had made a bit of progress. I went for longer walks, I went up to my local high street too. The high street was especially hard, as the last time I went up there, I had a seizure on the way back home, outside. That’s my biggest fear, my next seizure happening outside of my home.

Then a couple of weeks ago, a brand new health issue presented itself, just to cunt my life to fuck just a little bit more. 

I have altered sensations in my feet. It feels like a combination of “pins and needles”, and numbness. It has now crept up my calves a bit. In other words, it is worsening.

My GP sent me to A&E, and they discovered I have some compression fractures in my spine. I am now waiting for more tests. Walking is not easy, as the altered sensation is bad for my balance.

I had to pop out to buy a lightbulb from a nearby shop earlier today, which I managed to successfully do, but I am now paying the price. My feet feel super weird, and my lower legs too. I am sure I overdid it, and it was literally a 5 minute walk there, and a 5 minute walk back. FML.

The weirdest part of all of this is I have no back pain. The theory from the doctors is that the compression fractures are pressing on a nerve, or pinching my spinal cord, cause the issues with my lower extremities.

The doctors told me I could end up paralysed. They also told me if I find myself unable to walk, to get to A&E urgently. That would involve the paramedics, again. Obviously, all this is adding to my anxiety. So much for making any progress of trying to be normal again.

I have too much wrong with me, and too many ongoing conditions. I am now taking 24 assorted pills, tablets and capsules daily. Depending upon what these new tests show regarding my spine, there will probably be more drugs to come.

I never thought I would ever say this, but I take too many drugs. If I were a horse, they would have shot me by now. This isn’t my depression talking, I have genuinely had enough, and that newly approved assisted dying bill won’t be implemented quickly, so it probably won’t help me.

I’d hit my limit when I was diagnosed with epilepsy, and I’ve been in a bonus round ever since. Piling more health issues on top of that, and the others, is a recipe for madness.

What’s a poor, sad, sick hippy meant to do? Wait for more health issues I expect. Eventually, one of them will be bad enough to finish me.

My life actually ended a little over 6 years ago, when I stopped working, just as the partial seizures were ramping up. Had I known what was going on with my health at the time, I wouldn’t have resigned. But I did.

Sure, I might have some occasional fun making weird shit for the internet, but mostly the last 6 years have sucked ass. I could have just as easily done without them. I spend a great deal of time wishing things turned out differently on the day of my worst cluster of seizures. And I waste even more time being angry about my birth. 

With so much time on my hands, I reflect on my life a lot, and I think it was mostly a good one. I’ve done some cool things, been some cool places, and had some cool friends. You might not believe it, but there was a time when life was good for me. It’s a long time ago now. Looking back, I only have three real regrets, which isn’t that many when you think about it. 

Regret number one is that I didn’t become fluent in a second language. It would have been useful at times.

The second is not having a dog as an adult. My family had dogs when I was growing up, but I didn’t manage it myself. 

My third regret, is by far the most significant. I regret surviving my tragic premature birth. That’s the root of nearly all my problems. Had things gone differently, I wouldn’t be suffering today. Or any day. I guess ultimately, I mostly regret my existence. It’s not a fun regret to have.

After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real. 

Doug is also the author of “Personal Use by the northlondonhippy.”   “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read. You will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!

If you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?