Lady Of the Smart House

Electromagnetic Field 2024

Posted on June 13, 2024June 13, 2024 by ladylaura

Sometime ago, Himself told me of a festival. Organised by like minded people, held every two years, which focused on….well a bit of everything really. Then he told me that there was a programmable badge, and I was sold.

About the Festival

The EMF site states:

“Electromagnetic Field is a non-profit camping festival for those with an inquisitive mind or an interest in making things: hackers, artists, geeks, crafters, scientists, and engineers.
A temporary town of nearly three thousand like-minded people enjoying a long weekend of talks, performances, and workshops on everything from blacksmithing to biometrics, chiptunes to computer security, high altitude ballooning to lockpicking, origami to democracy, and online privacy to knitting.
To help matters along, we provide fast internet, power to the tent, good beer, and amazing installations, entirely organised by a dedicated team of volunteers.”
https://www.emfcamp.org/

They offered a carer ticket, and has accessibility information on their site, including that there was indeed accessible camping, so we went ahead and booked.

What happens at EMF

The festival itself runs from Friday to Sunday, with Thursday and Monday being set up/tear down days. EMF consists of a number of stages/workshops and lots of little ‘villages’ in the camping areas. Villages are clusters of people with similar interests, and visiting is highly encouraged. These could be already existing groups (like MakerSpaces or the Scouts), interest based (like crafting with textiles, digital crafting, board gaming, or robotics) or more demographic (such as the Furry High Commission, which was a hub of activity for LGBTQIA+ based mixers).

There are a number of talks on three stages throughout the event, some of which are paid speakers, but they also look for volunteers. These varied in subjects, from a cardiologist talking about health influencers, to someone talking about calendar systems, or someone tearing down and looking at the programming behind an industrial coffee machine. Talks were advertised prior, and you were encouraged to add them to your schedule.

Workshops were pre-bookable, some of which cost extra; usually to cover the cost of materials supplied. There were workshops on forging your own spork, robotics for children, a wide variety of activities! I didn’t partake on this occasion, as they usually required some level of dexterity.

There were installations, games and other interesting things to engage with and enjoy, and ultimately people were encouraged to be curious, explore and see what happens.

Null Sector was an area that really came alive after dark, with lots of music and lasers. Due to my fatigue and sensory issues (and the fact that my wheelchair was struggling with terrain), we didn’t make it there, but by all accounts, there was again lots going on!

There was all manner of other things – the festival had a phone network set up, with posters around encouraging you to call numbers. Wired high speed internet was available, as well as WiFi!

Tildagon – The EMF Badge

One of the highlights for me was the programmable badge that you could buy (for £13). This ESP32 driven badge allowed for programming, downloading apps and expansions (dubbed ‘hexpansions’) to be inserted…. and it has LEDs Now, I am at the beginning of my journey learning Python, so I haven’t had the opportunity to play too much since getting home, but I fully intend to experiment with what I’ve learnt as time goes on.

Accessibility

I attended EMF as an ambulatory wheelchair user, with Himself attending as my carer.
EMF had organised accessible parking, and an accessible campsite, which was located next to the family camping area, in the quieter part of the festival. There was both an accessible toilet, and accessible shower located very close by.

EMF does take place in a field, and whilst tracks were placed to have a main thoroughfare, there was a lot of ‘off-roading’ required, which was difficult given how wet it had been the couple of weeks before. Many vehicles found themselves stuck in mud during the set up, and me and my powerchair had a few difficulties when going over grass. This was mentioned in their accessibility information, so it was not a surprise.

The accessible facilities themselves were almost always clean (we had an experience at 4am in the morning where the toilet clearly was full, but the unit was still nice and clean and tidy), I rarely had to wait, and if I did, it felt like people were using the facilities appropriately. (There were plenty of standard toilet facilities provided, so it felt like people didn’t feel the need to abuse the admittedly less frequently used accessible toilet).

We did have some minor issues with regards to camping, and other people pitching up very close to us. I don’t know for sure, but I think the accessible camping suffered with an overspill of family camping without people knowing, as the areas were not clearly marked. Himself did a stunning job of marking our tent as one that needed accessibility, and people did try to ensure guy ropes were kept close to their tents – we didn’t have any issues with speaking with our neighbours and asking them to help keep some clearance for me.

Along a similar line, there didn’t appear to be any wheelchair spaces marked in the staging tents, which meant I often just had to park up in the aisle, which could, and did cause some issues with me creating a bottleneck.

I was approached by EMF’s diversity champion, and by Jonty, the main organiser, and gave my feedback on small improvements that can be made in order to help those with limited mobility. I felt like they genuinely did want to do their best, and that feedback they receive will be listened to and taken into account when organising the next EMF.

As for me, this was my first big adventure since the stroke, and my first real experience of being a powerchair user. I had to take many a nap in order to get through, and due to the ground being so uneven, I was finding my pain was worsened. (It is a good core workout though!). We did learn though, that I can get myself out of many situations, torque is often key in doing so, and that I have more resilience than we thought!

Final thoughts

EMF is a family friendly, neurodiverse, LGBTQIA+ positive atmosphere. The talks and workshops felt like people were excitedly sharing their hyperfocus, and that brings me such joy!
I’m already looking forward to EMF 2026, and highly recommend attending. Its a reasonably priced festival, and I guarantee, you’ll find your tribe.

image of battersea power station taken from inside lift 109

Lift 109 – Battersea Power Station Experience

Posted on May 8, 2024 by ladylaura

Not long after the stroke I watched a video of Lift 109 at Battersea Power Station with himself, and we decided to go.

Lift 109 – a history

Battersea Power Station started construction in 1929, to bring power to a growing population. Sir Giles Gilbert Scott designed the towering art deco building. In 1983, the Grade II listed building was powered down. The building was eventually bought by its current owners, Sime Darby Property, SP Setia and EPF. The entire area has been revitalised, and the north-west chimney has been revamped to include a glass elevator experience – Lift 109.

Booking and Accessibility

We booked our tickets online – this is recommended especially in peak season, but also for those who require accommodations. The standard experience includes a staircase of 39 steps, but can be bypassed by booking a ticket for the ‘wheelchair lift’, which can carry a wheelchair user, plus one other.

According to their website:

The accessibility lift will bring you, and your personal assistant, to the Lift 109 onboarding platform. Due to operational requirements, the accessibilty lift will not be available for every time slot and space is
limited, with a maximum capacity of two people.

Every third session has a capacity of one wheelchair/accessibility space per booking. In other words, the time slots on the hour and on the half hour will be accessible for those who need to bypass the stairs. Please note that this is due to the health and safety procedures in place at Lift 109.

If you are a wheelchair user or someone who needs to bypass the stairs, please reserve the accessibility Lift when booking your tickets:
1. Choose which day you are looking to visit.
2. Select your tickets and choose a time on the hour or on the half hour.
3. Reserve the Accessible Lift.
https://lift109.zendesk.com/hc/en-gb/articles/7334724011805-How-do-I-bypass-the-stairs

We booked tickets for a 13:00 wheelchair lift ride, and a 13:10 lift experience.

The Experience

We arrived in plenty of time, and walked around the shopping precinct for a while before making our way to the experience. We found that the centre was not particularly well signed, and it was a touch difficult navigating. It was pretty accessible, with lifts and disabled toilets – only the Changing Places toilet is locked with a RADAR key though, so we found that many of them were in use.

Upon arrival, there is security, including a gate. Bags must be presented. We showed our tickets to the person manning this area, and he gestured us down to a queuing area.

As it was two minutes to one at this point, we tried to go through and were stopped by another member of staff. We explained that we had the accessibility lift booked and our time was nearly there. We found this member of staff to be unhelpful, just stating ‘yeah, it’s fine’. Knowing what the website stated about half hourly rides only, this made me very anxious that we would miss the opportunity.

We very quickly realised that they were bunching groups together, which isn’t an issue, but we hadn’t seen that being advised on the website. After a few minutes, we were let through to the exhibition, where another member of staff took over. We approached this member of staff stating that we had a ticket for the accessibility lift and was met with a similarly disinterested ‘that’s fine’.

Being that I struggle with anxiety, neurodivergence, and cognitive impairments, I very much struggled with this laisse fair attitude, and continued to worry that I wouldn’t be able to get the lift.

Eventually we were taken through to a short show. Well, everyone else did. Due to warnings of loud sounds and flashing lights, I elected to wait outside. Finally we were taken to the accessible lift (and the angels sang!) and then into the main lift.

The lift rises slowly through a series of lights (and I do love me some LEDs!), to surface above the chimney offering great views of the city. This part of the experience lasts around 7 minutes.

The views are lovely, and you can see many great London landmarks. Our ride was pretty full, and it could be awkward trying to move around to see everything, especially with my rollator. I imagine it to be even more difficult with a wheelchair.

The descent is quick, and we were shown to the lift to go back down and exited through the gift shop.

Overall, we were disappointed in the experience. Whilst efforts had been made to make the experience itself accessible, it was marred by the anxiety cause by lack of communication from the staff members.

The Day my Brain Exploded… The story of how I suffered a hemorrhagic stroke

Posted on February 20, 2024 by ladylaura

Saturday the 6th of January 2024 started like any other day:

I was spending time at my partner’s home and we were watching Youtube. I’d taken some Cocodamol to help with the pain. We’d just settled down to have a bite to eat for lunch when all of a sudden I had a strange feeling come over me. It was like a cold, wet feeling inside my head, and I immediately felt a little… ‘odd’. Now, codeine has been known to make me feel a bit space cadet in the past, and I’d not taken any for a few days. So I figured it was just related to that. I told my partner that I felt odd, and they agreed that this was probably due to the co-codamol. So we waited out the four hours.

Now, I must stress, at this point, my only symptoms were mild confusion, especially when it came to my right hand, and some slowness in my speech.

Four hours came and went – I spent it entirely playing Animal Crossing. I was slow, I felt detached, but I could play. Himself kept checking on me, whilst playing quietly on the PC a few feet away. I didn’t feel better. They kept asking me if I wanted to call 111 and I said no, I’d be ok. I had a few moments during the day, where I wanted a drink but couldn’t work out how to pick the cup up, or had gone to the loo only to be confused on how to use the paper to clean myself. Eventually, I said I wanted to go to bed, I was super tired and I just hoped that when I woke up it was all over.

Spoiler: It wasn’t.

I woke up the following morning and whilst I think I thought I felt a little better initially, it became clear that things weren’t really improved. Himself really pushed that if I didn’t feel right and I was worried, I should call 111 or something.

We opted for the walk-in centre locally. I presented myself at the reception, where I’m sure I was a bumbling idiot being only able to say ‘I’m confused and my arm feels weird’. She tells me to sit down, and I notice that the advertised wait is 2 hours. I sent himself away as the waiting area was heaving. The receptionist comes over a few moments later and says she’s marked me as urgent due to being concerned, so hopefully I shouldn’t have to wait too long. I didn’t. I was the next patient.

The doctor did all manner of tests, including urine and basic neurofunction tests. I passed them all. He suggested that I go to A&E though as they would have access to more tests such as imaging and blood, and wrote me a referral. Himself came and got me and we made our way to A&E. I remember mentioning on the way that I reckon they wanted a D-Dimer test, to check for clots.

Now, the first port of call was the admissions nurse. Who was terrifying and questioned how confused I could be (after reading my note from the walk-in centre). Eventually, she relented and I was told to wait for the triage. Triage happened, the nurse said I needed more investigations and I was issued with the wristband.

The doctor came and called me after about half an hour’s wait. He was THOROUGH. Many questions were asked, and he clearly did well in active listening class because he regularly recapped what I’d reported. He suggested we do blood tests, and arranged for a head CT. I got bloods drawn, and walked down to imaging. I felt like the technician was a bit dismissive, and didn’t really help me up on the bed but was very concerned that I should be using a wheelchair to return to the waiting area. This should have been a warning sign for me, but of course I argued that I was fine, I had my walking stick, I’d be okay!

At this point, himself had been waiting out in the main waiting area for me, but parking was running out. I told them that they should go. We could be hours yet!

I waited in MAU for about 10 minutes and my doctor came to find me, and took me into a room. This should have been my second warning that something was seriously wrong.

“So we’ve had the results back… and we’ve found a small bleed in your brain”.

I was not expecting that.

He continued… “we’ve sent the scan to another specialist hospital for their advice. It’s small at the moment and it’s not causing any pressure or bowing. We’re going to move you to resus to make sure we can keep an eye on you. The stroke team will come see you. Don’t be scared. We’ll look after you. I’m here if you have any questions”.

I silently walked behind him to resus. I sent a message to himself. “Can you come back please. I’m being admitted”.

He arrived and I crumpled. What followed was a blur of observations, talking to medics, being told that I wasn’t going to be transferred and then I was. Himself went to get me some supplies and left at 10:30. We’d been told it would be 90 minutes at least for the patient transport to get here. They were exhausted and so was I.

About half an hour later, I was trying to zip up my hoodie. My hand wouldn’t stop shaking. Then it cramped up, more than I’ve ever felt. I wasn’t in control and it was retracting into my body. I shouted HELP! Just as I could see people coming, the convulsions started. First in my arm then spreading over my body. The last thing I remember thinking was “I’m going to die”.

Obviously, I didn’t. I awoke to an o2 mask on, and my doctor reassuring me that I was ok.

Patient transport arrived, and I was transferred, arriving at 2am on the ward. I text himself that I’d had a seizure, but I was ok.

I managed to doze off, to then be awakened by a doctor at 4am wanting to discuss getting my consent to have an angio. I scribbled on the form as I couldn’t actually write, and fell back to sleep. To, of course, be woken up at 6am for observations and meds.

The angio didn’t happen that day, but did the following day. They found no evidence of any abnormality, aneurysm, or anything that could really explain why the bleed happened. I was discharged on the Wednesday evening into the care of himself, with strict instructions that I return should I feel any worsening of my symptoms.

That evening, the fight truly began. The road to recovery.

This blog was originally conceived as a way for me to share how I automate my home to help manage life as a disabled person. And then the stroke happened. Its still going to be that, but its also a place for me to discuss recovery following stroke, as a younger survivor. The journey to recovery, returning to work, and how life has to change to accommodate my additional needs.