iiinova — where your digital self keeps evolving

John @jrh2385.bsky.social · 09/10/2026

I’ve heard many times that drilling out the gun barrels on miniatures is boring. It bloody isn’t! I stabbed my thumb in the process last night! 🤦‍♂️

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John @jrh2385.bsky.social · 02/10/2026

I didn’t even get to 2 weeks before today’s #seizure. It wasn’t too bad, but it happened not long after getting off the exercise bike and a very quick shower. Meg had a vets appointment so I was in a panic to get ready, & I think that is what caused it. I’m pretty sure it was self inflicted.

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John @jrh2385.bsky.social · 28/09/2026

Ive just had my 1st session of #AndysManClub. I was really nervous going in, but it helps to talk. I feel I didn't have much to say, especially with it being my first time. I am still doing the #epilepsy online support groups, but I may alternate. Anything like these and just speaking aways helps.

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John @jrh2385.bsky.social · 25/09/2026

I had another appointment with my #epilepsy nurse today. My #VNS power has gone up 1 more click, and am planning on gradually taking the Cemobamate earlier to see if it helps with the fatigue, and possibly increasing it again. She suggested spending a week, observed for a week connected to an EEG.

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John @jrh2385.bsky.social · 20/09/2026

I made it to 3 weeks without a #seizure today, about 20 minutes after leaving a local #epilepsy support group. Yesterday was exhausting, and I overslept, so I am putting them as the trigger. Last thing I remember is going up hill towards one of the shops in Newcastle, and coming to at monument.

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John @jrh2385.bsky.social · 17/09/2026

I’ve just got back from seeing my favourite toy advert, #TheTransformersTheMovie, on the big screen! It was amazing, although that scene still hurts a little. I did not expect there to be a post credit mini film, wow! #TilAllAreOne #RIPPeterCullen

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John @jrh2385.bsky.social · 30/08/2026

I’ve been drained for a few days, mentally and physically. Although still tired, I felt better today and tried going on the exercise bike for the 30 minutes, unfortunately I had a #seizure, but was able to safely get off it. Not as good as my 2nd last, but 5 1/2 weeks is a good gap. #epilepsy

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John @jrh2385.bsky.social · 25/08/2026

I’ve made progress with my Ice Planet Lieutenant, and realised something horrifying. It doesn’t have a purity seal! Is it an Alpha Legion spy..?

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John @jrh2385.bsky.social · 15/08/2026

The toilet flusher in the bathroom has started to look sad, ever since the coating started to come off ☹️

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John @jrh2385.bsky.social · 22/07/2026

I’m blaming my last #seizure on not switching off and playing a game to keep me off my feet, so I’m using it as an excuse to start up #FFXII #FF12 . It still has one of my all time favourite intro cinematic.

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John @jrh2385.bsky.social · 22/07/2026

Bugger, the #epilepsy strikes again just over 2 days later. I think I have been pushing myself when I should be resting? No warning, my head was still in #seizure recovery

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John @jrh2385.bsky.social · 21/07/2026

As happy as I am that I lasted to 6 weeks with yesterdays #seizure, I’m kinda shocked because roughly half of this time was spent in the decline that I get, which usually takes a few days. Has this been the longest it has taken? So much of this time has been in mental exhaustion, waiting… #epilepsy

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John @jrh2385.bsky.social · 20/07/2026

6 weeks to the day since my last #seizure I had just got into the Taxi after the Gym when it happened, thankfully I got home safe. I have been dreading for 2 weeks (cancelling several things that I should have attended). I’m also at the start of the next med change, just increased dosage #FunTimes

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John @jrh2385.bsky.social · 06/07/2026

I’d like to say I’m surprised at what the orange man did, overturning the red card, but at this stage, I’m really not. Regardless of who wins the #WorldCup, I have a feeling he will claim it as his own, like he did with Chelsea last year.

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John @jrh2385.bsky.social · 29/06/2026

Realisation over the weekend that my depression, struggles & urgent need to change everything over the past few months could be the start of a #MidlifeCrisis? Do I continue with what I have been doing over the last 15 years, & getting nowhere to prove myself wrong, or do I take a leap? #Epilepsy

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John @jrh2385.bsky.social · 20/06/2026

I had another checkup with the #epilepsy nurse yesterday, and reviewed how myself, & how the year so far has been. The #VNS' power has been increased, and I can't tell the difference. there is a followup appointment getting ready in a few months to check the power. One of my meds is also increasing.

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Reposted by John

A. D. Delgado 💙🪷🌊 🚫DM #CaliforniaLove @fiitchicknation.bsky.social · 14/06/2026

Remember tomorrow is President Obama appreciation Day. We will never recognize Trump birthday !!

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John @jrh2385.bsky.social · 08/06/2026

I made it to just over 3 weeks since my last #seizure which isn’t the best. It happened not long after coming out of the gym, and I felt fine up until it happened. It was instant. The last thing I remember is searching for my bus pass outside of the bus. I still don’t know where it is… #epilepsy

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John @jrh2385.bsky.social · 05/06/2026

I had an amazing sleep last night! I woke up feeling brilliant, and then I did wake up and it was 3am and realised it was a dream…

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John @jrh2385.bsky.social · 01/06/2026

Following my #epilepsy nurses advice I have finally started going to a gym, seeing a personal trainer that is cool with my seizures. Hopefully, my fitness improves and I will be able to tolerate higher doses of my epilepsy meds as a result. next session in a weeks time (head permitting) #FleshIsWeak

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John @jrh2385.bsky.social · 16/05/2026

I made it to 30 days earlier, which is good. I have been waiting for this #seizure to happen for a long time, unfortunately, there was no warning and I was cooking, so I’m glad that my parents were around to avoid a fire. I have been told it was a small non convulsive, and I came out of it quickly.

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Reposted by John

Rach @dontrachquit.bsky.social · 13/05/2026

This Friday, we are... 🌻 STREAMING FOR HOPE 🌻 Join me for a special stream, 12pm-5pm BST, campaigning for mental health education and proactive suicide prevention with @HopeForTheDay This Mental Health Week, let's champion this great cause together. @Loadscreengg #HFTD #Ad

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John @jrh2385.bsky.social · 07/05/2026

I’ve just done to Jonny, what he tried to do to Lisa. Get him framed. #TheRoom

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John @jrh2385.bsky.social · 06/05/2026

I booted up my old IPad at the weekend, and completely forgot about the #BrianBlessed alarm clock! It has been off the App Store for a long time. Very random app that worked so well. (There is a load more quotes by the legend, but they are all played in random order)

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John @jrh2385.bsky.social · 02/05/2026

I had an amazing night watching #TheRoom at the Tyneside Cinema last night. I had seen it before, but I didn’t think it would be pantomime on the big screen. Sitting close to the front and didn’t expect the spoon throwing, you could say it went over my head… Cool meeting Greg Sestero too, nice guy.

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John @jrh2385.bsky.social · 17/04/2026

Yesterday was #seizure reset day. I didn’t quite get to a month, but close enough. It happened when at the Doctors waiting room, but I was out of it before the appointment, and was just confused when I saw the Doctor. There was a warning last week when going somewhere with family, the temperature -

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John @jrh2385.bsky.social · 15/04/2026

#RandomThought in the bathroom earlier today when I glanced up and saw a spider on the ceiling. Do many spiders sleep when on the ceiling? Do some weave hammocks out of their webbing to reduce the chance of falling?

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John @jrh2385.bsky.social · 07/04/2026

First time doing fitness boxing for almost 2 years earlier today. Absolutely destroyed me, but I kept going til the end. I had to stop doing it because the Cenobamate really drained me last year, I was always tired after Tuesdays volunteering shoots, or it was fully booked. I will feel it tomorrow!

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John @jrh2385.bsky.social · 30/03/2026

I’ve always enjoyed #vegan / #Vegetarian fish alternatives, despite how uncommon they can be in the shops. I can’t help but wonder why I’ve never seen any called ‘’artiFISHal”. It feels like a missed opportunity for a product name.

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John @jrh2385.bsky.social · 20/03/2026

7 days after my last post, the #seizure that I was longing for has happened. I was starting to wonder if the ‘decline’ that I felt was the aftermath of a nocturnal seizure, but I know better. 5 weeks is brilliant! Thankfully I had a few hours sleep afterwards, which I don’t usually get. #epilepsy

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John @jrh2385.bsky.social · 13/03/2026

Is it bad that I am longing for my next #seizure? I have been on a decline for about 5 days, feeling mentally exhausted. This sometimes happens for a few days before, and once the fit is done, it is wiping a slate clean, and I am fine after a few days. Yesterday was 28 days, so I am past my average.

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John @jrh2385.bsky.social · 12/03/2026

Ive recently finished an #EpilepsyAction support group, which led to me vaguely describing the plot of the first terminator film for 10+ minutes, to my mum, who was needing the toilet, and looking at me confused. TBF, I have been a bit off in the head for a few days, and on #seizure watch #Funtimes.

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John @jrh2385.bsky.social · 21/02/2026

3rd #parkrun done. Not my best time, but not my worst either. I was flagging a bit, so it was more of a brisk walk at times, rather than a run. Hopefully they will be more than once a month in the future?

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John @jrh2385.bsky.social · 12/02/2026

3 1/2 weeks isn’t the best but I’m accepting it as the new average between #seizures. I’ve been told that it was a non convulsive, but I briefly went ridged once it started, as if I was going to #convulse. There was no warning, and no decline. I have had a few bad nights sleep, so could that be why?

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John @jrh2385.bsky.social · 19/01/2026

I have a habit of doing stupid things when I am recovering from a #seizure. Today I found myself dismantling a heavily jammed up vacuum where the filter had disappeared. Thankfully it now works, and the battery was depleted before. This is why I play games, to keep me from causing trouble 😅

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John @jrh2385.bsky.social · 18/01/2026

My first #seizure of the year happened earlier today, and 37 days is quite impressive! This is something that has certainly been building for a while. I had a decline just over a week ago (daily headaches & mistakes) & my #VNS stopped it, I was also a bit scared doing #parkrun yesterday. #epilepsy

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John @jrh2385.bsky.social · 17/01/2026

2nd #ParkRun done. I haven’t been feeling 100% and almost quit a few times before completing the 1st lap. So glad I continued. 7 minutes better than last time. Reminder! don’t do it wearing thick jacket, unless it is snowing…

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John @jrh2385.bsky.social · 12/01/2026

I just realised after my last post, that I didn't complete & post my 2025 #Epilepsy #Seizure diary. #FunTimes

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John @jrh2385.bsky.social · 12/01/2026

The last week has been a bit scary with the #epilepsy, as I have felt myself on a long decline. I’m pretty sure that the #VNS stopped a #seizure happening yesterday, it went full blast when I felt myself phaseout and I was back. I have been a little disoriented since, but not as bad as I was before.

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John @jrh2385.bsky.social · 28/12/2025

Unfortunate moment earlier, when an orange reminded me what time it was… I had blanked that song from my mind many years ago.

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John @jrh2385.bsky.social · 27/12/2025

I finally gave #parkrun a go, after my #epilepsy nurse recommended it to get more active. First time running after many years, because I would occasionally have (hopefully unrelated) #seizures when doing it solo, so being in a controlled environment is better. I will hopefully keep it up. (3 laps)

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John @jrh2385.bsky.social · 20/12/2025

Does anyone feel that their daily events influence their #dreams? Yesterday, my mum was looking for blu tack / alternative product to put Christmas cards up, and last night I dreamt that I went to Waterstones & W.H. Smiths in Newcastle to buy some. Fun dream...

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John @jrh2385.bsky.social · 11/12/2025

Today was #seizure calendar reset day. I have had a few busy weeks, so it no doubt contributed. I got to 31 days which is very good, unfortunately it was in the dentist waiting room, so it was witnessed by several people. The dentist knew about the #VNS, which may have made it shorter? #epilepsy

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John @jrh2385.bsky.social · 05/12/2025

I’ve just had an appointment with my #epilepsy nurse for the update and #VNS check. She mentioned something that I have been worried about for a long time, and that is I really don’t get out as much as I would like, because of the fear I have. I have been given the name of a support group also.

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John @jrh2385.bsky.social · 11/11/2025

Yesterday was #seizure calendar reset day, and 19 days is pretty bad! I had been busy for 4 days, almost non stop, so I think that it could be a trigger? I was with friends when it happened in public, so thankfully they were able to keep me safe. #epilepsy

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John @jrh2385.bsky.social · 27/10/2025

After being on a higher dosage for around 7 months, my Cenobamate is going down. Although there has been positives, it can be really difficult to cope with the fatigue that comes with it. I will not be going off it, but one of my others may be increasing? The waiting game of #epilepsy medication...

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John @jrh2385.bsky.social · 21/10/2025

I feel like there has been a long decline to this #seizure & I have been drained for a while. I sent an email to my specialist this morning with a diary of the last 2 years with seizures and med changes. As much as Cenobamate has helped, daily life is a struggle. I have no energy, I am just drained.

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John @jrh2385.bsky.social · 08/10/2025

Do you know if people can become resistant to #seizure medication, @brainablaze.bsky.social ? I have been going through my medical records in preparation for an appointment with my specialist & realised I have been taking one for 22 years & Im sure my seizures are more frequent than they used to be.

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John @jrh2385.bsky.social · 08/10/2025

I have a phone appointment with my #epilepsy specialist at the end of the month, to discuss the changes with my medication this year. There has certainly been benefits with the #seizure length and recovery time, but I am really feeling drained and not myself the rest of the time.

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