Skip to main content

MS

Living with MS Edinburgh travel!


Saturday 21st May 2016, the day of the titled event Living with MS Edinburgh. I had had the ticket for this event for a couple of months and was looking forward to it!

Edinburgh city
Edinburgh City

What I hadn’t been looking forward to (initially!) was a night of next to no kip, maybe an hour maybe 2. One of those nights but howay man, not before a choice event in Edinburgh!


I gave into being awake at approximately 4am and picked up the book ‘No Excuses No Limits’ which I had been meaning to finish for months! I was reminded of Paul (the author) though and my time spent volunteering with him, and also got me looking forward to meeting someone for a Social Media Support role with the WEA in the week ahead, and looking further into another job application too. Thoughts!

Anyway, I turned my alarm off (having not been woken up by one for a long time!), got up etc. and received a text from my due taxi at 6:18, not 6:40! So I got to central station earlier than expected and just as well!


hTC broken screen
Smashed :-(
As my hTC got damaged at the Horror festival (blog coming soon!) I attended the week before, I was somewhat relegated to my 3rd-hand iPhone 3G – that isn't so smart these days – I was reminded that I had booked my train tickets as ‘smart tickets’ requiring a certain App in support. Yip, said 3G couldn't download that App just being too damn old! Just what I needed with time running out before my train was due and having NO tickets!


Thankfully Kelbel who I was travelling with arrived (after me and a lot of attempted ticket-failures) and when actually on the train and on the way up, got the download on her phone just after the inspector had passed me. Phew. He came back for the scan!

I took my seat with my shit phone (which does perform as a basic phone and some net v slowly), no book, no tunes, no company, but a notebook and pen and began writing this. I intended to keep some ink for actual MS writings but actually enjoyed my 1st ‘travel blog’ (ha)! Silver linings!

So, how was the day!? Brilliant. There wasn't a single part – apart from being cut off from real-time digital social media! – I didn't enjoy or find informative; networked and loved the food too!

Thank you for reading this; stay tuned as the event blog is coming very soon! (and is up and ready here!)

Comments

Popular posts from this blog

F1 Aerodynamics in Schools

Being a STEM Ambassador, I keep check with what STEM enrichment activities are planned that I feel I could support with my experience. I saw an “ F1 Aerodynamics ” related request and it tickled my buds somewhat! So I vested my interest via the formal portal/method to/with STEM and this was responded to. What was the challenge? It is a global competition given as per: “ The Competition - What's It All About? You are a Formula One™ team commissioned to design, construct and race the fastest Formula One Car of the Future, powered by compressed air cylinders. ” The first of the activities was in a middle school in Whitley Bay, to simply share my experience (having been an Aerodynamicist) with the Year 8 kids taking part in the F1 challenge. I enjoyed helping them with what they were doing at that part of their challenge.  BBC! Wow. I would have loved to have had that opportunity at that age. Unbelievable! Showing my age, a bit?! (my middle school had a

MS blog October 2023

  MS blog October 2023 25/9/23 This week of this, bad sleep, fatigue, affecting speech - #Dysphasia - and fatigue linked problems like forgetting to do certain things, eg. Download Toon ticket properly! Tired.                                                 04/10/23 (Wednesday) Again bad sleeps, bad #fatigue. Here's the thing. More notable 'cognitive overthinking' in that I am not on the money. Yet, was fine for the #MS #Zoom on Monday night. And starting to unintentionally upset Catherine, and therefore me too.   FB post:   #Tysabri At time of writing, I am pretty bloody next-level-tired. Or feeling fatigued, in the #MS world. Those who know that; know. Yes, I AM saying that #MS #Fatigue IS different to ‘just’ being tired. Who am I to say that? Someone who has lived with the twat (#MultipleSclerosis) for maybe 26 years now. Maybe more. I don’t know. So, #Tysabri. Well I started with this amazing #DMD (disease modifying drug) over 13 years ago, and it “made me a new man”

Ocrevus

  Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi