Tuesday 19 August 2014

cartoon physics

Man oh man.

This is likely to be one of those moany blogs - I know it doesn't do anybody any good (least of all me) but I can't help myself today!

Long-time visitors will know that my DMT of choice is Rebif - although I genuinely can't remember there being a massive amount of time spent deliberating, the decision mostly being made due to needle-size and visibility.

What a wuss.

Anyway, I've broadly tolerated it well - those pesky flu-like symptoms aside, coupled with a bit of bruising and tenderness when I stick to my favourite injection sites. Which is why I use an iPhone app to track them.

My injections are Monday, Wednesday and Friday - like most (all?) of the DMTs on the market, it's recommended that the injections take place in the evening so you can sleep through the worst of the side-effects.

I've had a couple of experiments (one intentional, at least one accidental) with injecting without taking pain killers, but aside from that (and really, what sort of durr brain consciously goes against received medical wisdom?) I've tolerated it well on the whole.

But for the last couple of months, I've noticed that I've been waking up on Tuesday feeling like I've been run over by a truck, more or less immobile and not exactly the sharpest tool in the box.

I like to think that these symptoms are way better than the alternative (*touches wood frantically as he hasn't had a relapse since 2012*), but it seems like the two-day gap is what's doing me in.

I'm planning to put a call in to the MS Nurses and maybe the MySupport help-line, but I'm sure they'll just tell me to keep on keeping on.

There are probably some other elements at play here - house sale, changes at work coupled with the stress of working in a cultural organisation, illness in the family, living with the in-laws, blah blah blah.

But really - is this the best I can hope for? 

The answer to that - in the cold light of day - is probably yes.

I have a chronic illness with an indeterminate prognosis and the DMT I'm on (one of the front-line choices available) is one I can broadly tolerate. And just a cursory look at the mess of stuff which is happening in the world tells me that this is what is widely referred to as a first-world problem.

But where's my magic wand?

* SELF-PITYING WHINE ENDS - thanks for letting me moan, your turn next time!

While searching for a title for this blog, I came across this Wikipedia page about the Laws and Rules of the Wile E Coyote & Roadrunner cartoons - enjoy!

Thursday 14 August 2014

this kind of music

This blog is just to say that the issue of Open Door (from the MS Trust) featuring me and SwissLet wittering on about going to gigs (along with other articles) is out now.

I must say, however, that the opening line of my bit is shocking - when I saw the proof I was horrified with what I assumed the editor had done.

Until I checked the original document I'd sent over and realised that I really had started it that way. And me an English graduate!

If you want to read it (and really, why wouldn't you?) it's below - I tried to embed this with it open at the page which features my big stupid face, just as it would be if you were to come to my house... but the options don't seem to work.

(the article starts on page 12)

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?