Showing posts from 2023

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”

Orbital Optical Delusion

Orbital Optical Delusion As soon as I saw that Orbital were releasing another album I had to pre-order as soon as possible. That was last year (2022). Cometh the day, the hour, 17th February 2023; cometh their 10th album! It dropped through my letter box - CD, and actually a day early! - so  listening sessions were planned. I scribbled some notes per tune in my journalistic fashion - ahem - that I have left as they are. Basic. Ringa Ringa Beautiful and haunting ghostly voice, layered on bouncy Orbital sounds that pull and stretch you. Freddie's coming to get you! Lured in 👏 Day One Another featuring a different, but equally stunning haunting voice. This time obviously balanced with the actual tune stabs, giving a well rounded dark hitter! A void will suck you in. Are You Alive The vocal! Lush. No haunting in it, but with the mid-range it's thoroughly gripping. The break in the beat - attention deepen-er - then your back into the journey, as the voice gets an element of lost in

Newly Diagnosed MS Presentation 2023

Newly Diagnosed MS Presentation 2023 In June 2023 I was asked by the Multiple Sclerosis Society if I could assist with an event for some people recently diagnosed with #MS. I was asked to give an approximate 10 minute presentation as someone with MS to talk about my experience of being diagnosed and life since diagnosis – have to say, it needed to be realistic but upbeat too! I happily accepted! The event was at the Grand Hotel, Gosforth, Newcastle, 15th July.  See the running order below, followed by the speech I wrote and gave:   The running order was:   10.15 for 10.30 start – welcome 10.45                  Gill, MS specialist nurse, RVI on the role of the MS nurse 11.15                  Dr Martin Duddy, explaining MS, research and treatments 12.15                  comfort break 12.20 /12.15        Personal perspective of being diagnosed – Roger 12.45         Over to you – chance for people on their tables to share their experiences and learn from                   

Arthur Super Dog

Arthur Holiday! My better half and her family went away for a week in the sun and fun, leaving their dog without them. Don't worry, it was prepared for his care before any holidaying was done! Here's where I step in. I know Arthur (the dog in subject) well and as I am a dog man, Catherine - my other half - asked me if I'd like to have him for the week. "YES!" was my instant reply! I feel honored to have been asked! Those who aren't dog friendly or knowing about their care, may not get that. I do and love them! So, I had an amazing week with an amazing dog. Arthur really is a class dog! Back to me. If reader doesn't know (probably do) I have #MS, and that is the main reason I don't own my own dog. See the blog about that and reasoning . However! A week with an ultimately calm as anything small dog was a challenge I simply wanted! It took me back in time to my 1st dog as a kid - Gripper - in my village where I live again, and doing what I did naturally

Early 2023 MS

Early 2023 MS A quick rant of realisation. This year, certain things - MS things - have made me realise further about my bastard condition, illness, disability, whatever. Thankfully nothing too dramatic at all, just me being an overthinking twat. Falls A couple of; internally and externally  Fatigue Showing its head all for the more Cognition Noticing how it’s worsening; in my head lol Yet, it is the winter season and I am all too aware of that. These days it affects me more. MS affliction and joints too (wear and tear, fair cop)! A few things: That I feel the need to walk more (knees disagree) I should 'somehow' socialise more Watch less TV (mental and financial benefits!) Be more mindful of my balance Keep searching for motivation with improvement Always accept more; Wembley* is a no-go Grab back some self esteem And that’s a few?! Well, yes. Always more. I’m human. Who’s not. I’m not going to waffle on here about the above ‘list’. However, there is one worthy - at time

Confident posture

Confident Dynamic Posture   Now at time of writing I'm 45 years young, and possibly having had MS as a living companion since I was 19, maybe younger. Something that affected my confidence? Well, partially? I have said several times about my life with multiple sclerosis which was never on the plan. However, due to my age and experience with this unwanted guest now, I can reflect back on some of life, with erm, thought! lol In a word; 'confidence'. Is that linked directly to MS? Well it CAN be . And I know that personally. Yet, here's a long-term memory (yikes. 26 years ago (not that long-term!)!) Running. Seriously! As I have a great relationship with MSRRF , a PT I see there to help with MS physicalities made me realise that yes, I do lean backwards; normally . That itself aligns with something even said to me a good few years ago by a friend. I 'had a reason for' that. So I thought. 'Leaning'. My previous blog. I mentioned: "That itself aligns wi