Gift and cures for disability

Just recently on Dragons Den had an episode with a unproven cure for M E which they have had to Remove from iPlayer and generally even in mainstream media getting a poor response.

Interesting such stuff isn’t universal as disability isn’t a homogeneous lump, for example Brain Injury doesn’t get any, but lots of we can cure your child who is neurodivergent ie ADHD and similar.

It’s one reason I moved away from the dyslexia groups admittedly nearly 20 years ago!

Memories and Anniversaries


Been a few anniversaries or dates of notes, recently including Hampton Court’s dry moat being wet and frozen! Similar to 10 years ago when I was getting my independence back on the bike, and terrifying Sara as I had no concept of how unwell and different I was!

Didn’t freeze at least that year, though I was very cold! Which comes from being unwell/fragile I guess!

And Claudia had her 16th birthday, which reminded me of Claude and with that the various stories he told.

10 years!

My skull cracked!

It’s my 10 year anniversary, that I didn’t quite make it to work and well life changed from then on.

I didn’t realise for probably a good year by how much, mainly as until you try some thing and it’s harder to do or not doable anymore. And the mind is very good a glossing over problems even brain injuries!

It’s not been a linear process I very much needed help be that Sara or the local Headway group who got me back into the NHS system so I could get rehabilitation and simply learn and meet others like myself.

But today I shall be fairly self centred and have cake!

Bikes and disability

Old MTB with panniers and bar bags and orange pedals

One of the things that change some 10 years since my brain injury see below! Is that cycling which was always a hobby/leisure activity also became my way of travelling about as I don’t cope with busy public spaces well, and so public transport is hard or just not doable!

Back of skull with crack running diagonally through

I was interviewed by Wheels for Wellbeing recently and talked about this and my forthcoming visit to the Disablity Expo where my only realistic way to get their was via bike, as I can’t use the Tube/DLR I did try once, never again!

The 3 or so hours at the event where the most exhausting for lots of reasons mainly overloaded ie too much noise from different places, and movement and so on being the delicate wee flower I am!

Did see some fun bits of kit though with wheelchair attachments and recumbent bikes!

Recumbent bikes one of which has fat bike tires

Tale of two mugs!

King Charles coronation mug

This weekend was coronation weekend or excuse for a street party! Wasn’t as engaging on tv as the Queens funeral but historic never the less and had a lovely street party next day, with much better weather!

Roger in room in front of photo board that says I support the Acquired brain injury strategy

But today went to Parliament for the reading ie some speeches by Chris Bryant MP who is the man (mosty) who is pushing this forward. While I wanted to be their as, we as group tend to let stuff happen for us than been with us?

It was hugely stressful and exhausting! Every one was lovely I even managed to recognise folks! But oh I am paying for it!

Westminster Hall

I was amazed how easy it was to visit just some airport type put stuff in a tray and get patted down, as my MP said well it is your building! I did enjoy having a wander around briefly at the end.

Tea cup Houses of Parliament and paper bag plus a invisible disability lanyard

I also got a cup as well I wanted a treat as I felt proud I’d managed it, I did twitch a fair bit on the train home, and have generally felt exhausted but I’m proud that I managed it, and I enjoyed parts/felt I should in other parts, but good day nonetheless!

Sleeper!

We have been up to Fort William on the sleeper train which now has double beds, rather than bunks.

Was 5 hrs late on the Friday night so got into to the train 12ish? And didn’t get to the hotel until 3 pm the next day but the up side was we saw the Highlands!

Sara on train with snow capped mountains in view

Was amazing weather for Scottish spring! 17 degrees so had a lovely few days, including a dramatic drive past Harry Potter Bridge or Highlanders Loch!

Tower in deep loch

And a boat trip in the sea loch with Seals and Deer! Again beautiful weather!

Roger and Sa on boat

And views of Ben Nevis which last time had been under clouds which is fairly common!

Ben Nevis snow capped from loch

Even got some deer and views on way home, was a fantastic adventure if exhausting particularly as I didn’t sleep well on the sleeper and I don’t cope well with holidays anyway but I loved it.

Sara reflected in window with sunset over highlands

Let there be light!

Dark wooded path lit by light

Late last year I reduced my days working down again to two, which seems to be working in that I’m not fatigued constantly and am managing to do stuff.

Such as though not limited to going for a night gravel ride timed to meet the road gang at the pub. I do love night riding but it is hard work cognitively and physically, and as such I’ve only managed maybe one or two every year before this.

So this is huge improvement and well enjoyment and well a success so I’ll take that!

Palace of light

Hampton Court gate house lit up in colours

It’s been a shocking bad month, I’m not a fan of Christmas at the best of times but this month has been awful for various reasons!

So decided that I’d give the light show at Hampton Court a go, as I’d wanted to go last year but though it would be too much!

Lit up serpent in pond with lights on trees

I loved it, was in places rather challenging in that my broken vestibular system doesn’t like low light and odd lights so a walk around and though the Palace with lights was always going to be hard work!

Greyhound lights in one of the courtyards

So I’m very pleased with myself if shattered!

Boom and bust!

Back of roger’s skull with crack running though it

One of the things about a brain injury is thinking isn’t for free and so you get tired and takes a few days to recharge.

I had a lovely day yesterday went with Sa to Kingston then on to Wimbledon for a meal with Headway South West London saw new and old faces, was lovely!

But I’m paying for it now! I had hoped to go to this Herne Hill Velodrome tent which has talks by various folks including some folks I occasionally interact with on the socials, today.

But as does happen I’ve used up too much brain and don’t have enough today, it does happen less frequently, though that’s fatigue management than recovery!

Ie I’ve learnt not to push my limits! It is frustrating it’s why I only work part time now, but it is what it is!

Jubilee Street Party!

Sara standing next to life sized queen poster, with same handbag!

We normally have a street party most years, but this year is Jubilee!

And as such we had a band for the afternoon which was great lots of dancing! And later pizza!

The rain held off until the evening but at which point had whittle down to less folks anyway!