Tuesday, 5 August 2014

you ain't seen me, roight?

an Eagle Eyed Action Man earlier today
The more eagle-eyed amongst you may have noticed that a few posts on here have been either deleted or edited.

A couple of incidents recently have shown me that people really don't understand how all this STUFF (the internet, social networking, all of that) works. People are going around with the idea that what they get up to in this particular sphere doesn't reflect on them in the REAL WORLD

I'm guilty of it myself, blithely sharing intimate details of my health in the mistaken belief that I was only sharing it with people who were also in the same particularly-crappy club. WRONG

Similarly, recent posts about our house could have a detrimental affect on its sale - which is going through quite nicely, thank GOD. Yes, we're happily in the limbo of Sold Subject to Contract. Still a way to go but at least something is happening.

We've got a lot of stuff to do so here are the headlines:

My so-called [by precisely no-one] celebrity activist life continues. In recent months this has seen:
  • I've contributed to an article for the MS Trust's Open Door magazine about going to gigs - I don't know when this will be out exactly, but it's very nice to be asked.
  • By sticking my oar in on a conversation that the MS Society started about phone apps to help manage MS, edited highlights from this old post may be featured in the November edition of MS Matters.
  • The MS Trust also got in touch to see if I'd be up for talking to someone from a national drama broadcaster about a potential future plot line in SOMETHING involving a 40-ish bloke going from initial symptoms to diagnosis. I prepared for a 5-minute chat, spoke for 40. 
Longterm visitors will know of my problem(s) with Linked In, officially the dullest social networking site. Anyway, I'm a member of a group called the Association of Disabled Professionals UK and the other day someone posted a link to a really interesting article on DisabilityNow:
I recently read that last year, about 220,000 more disabled people lost rather than found a job. Other research suggests that if a disabled person loses a job, unless they get another one within six months, they are likely never to return to work. For all the talk about improving the work opportunities for disabled people and all the effort and state funding spent, often ineffectively, in trying to get unemployed disabled people into work, there is a revolving door throwing even more out into worklessness.
Read the whole article here.

And finally - just in from "potentially-interesting-but-at-first-glance-confusing-INITIAL-research-findings", people on Twitter and elsewhere have been going mildly bat-shit today about a possible link between HIV and a lower risk of developing MS.

I'll let that one sink in.

It's not yet known whether it's HIV's immune-system surpressing "qualities" which is leading to lower instances of MS, or the combination of drugs used to control HIV.

As a related aside, am I the only one who remembers talk of a lower onset of disability in people with MS who drank alcohol without restraint?

I know this isn't what the powers that be are saying but it's at least mildly diverting to imagine that unprotected sex, needle-sharing and pounding down 40s could be your way to a healthier lifestyle.

It's no more ridiculous than the recent Cancer Research UK fundraising program where people were encouraged to have barbecues.

Someone should have thought that one through, right?


swisslet said...

Sorry for your online/real life collision. I've largely managed to avoid that, but that's not ideal, is it?
I too have had the pleasure of talking to that nice lady from the national broadcaster.... and like you, I was expecting a quick chat and ended up speaking to her for AGES. She seems interested and they seem very keen to make sure they do a good job of it, which is excellent news for all concerned.
In other news, I've just been offered a place to run in next year's London marathon for a well known MS charity. Yikes. Look out for me, I'll be wearing blue.


stevedomino said...

Hey there. There hasn't been a real-life/online collision, just a realisation that there could be. Derby is *makes minute gap between fingers* that big, so it seemed the safest course of action.

You and I appear to be the go-to guys in our situation (MS, 40-ish, male) especially with the MS Trust! With regards to the drama, I hope I didn't put them off by saying how very undramatic my own diagnostic process was. I'm glad I'm not the only one who likes the sound of his own voice.

Good work on the marathon (you mad sod) - you'll do brilliantly.

stevedomino said...

This comment is actually from the divine MS Cranky Pants, which she was forced to send by a cunningly circuitous route because of excessive ads. It certainly looks as though Google is doing everything it can to turn people off using Blogger!

In case you delete this post, I'm responding quickly and without much thought (unlike my usual considered responses) (...considered what, exactly?) (now I'm just being weird - SORRY)

Happy to hear the house sale is going well. But, sorry there have been Incidents. Finally, yay on being a celebrity of sorts. Don't abandon those of us who liked you even when you were NOT a celeb. That last bit, flip as it sounds, really was meant as an admiring remark. It's cool that you're an activist. Really.

swisslet said...

I told the researcher that the worst thing they could do is reinforce everyone's perception that MS is a creeping, inevitable path to ramping disability, a wheelchair and death. My own path probably doesn't make good drama, but she was especially interested in the whole diagnostic process (which took 4 years for me) and when I said it was so much harder for the people around me than for me, because I knew what it felt like. I'm not a viewer, but it will be interesting to see how they approach it. She's doing her research anyway. She remarked how struck she was that everyone she spoke to had such different experiences. We'll see. I suspect I have you to thank for the MS Trust, btw.... but it's nice to be able to sound off about this stuff, eh?

(I get the odd real life person stumbling across my blog, and it's always weird.... especially when it's someone from work)