Thursday, 13 June 2013

don't want to be one of THOSE moaning MS bloggers but...

... HOLY SHITBALLS, I'M FECKING EXHAUSTED.

(OK, that's out of my system)

It's the last few days of my 30s. I'm not TOO bothered about turning 40 - my wife would be only too happy to say that I'm almost perpetually grumpy so I'm already well into old fart territory.

We all need a role model
My 30s have been pretty tumultuous - like most people, I guess:
  • in my 30th year I ended a relationship (which involved selling a house and moving back into my parents' house. Luckily they're amazing people so this was actually a great time for me! I just wish I'd saved more money in this period. Anyway...)
  • I also started a relationship with the woman who would eventually become my wife
  • I was diagnosed with MS
  • I was made redundant from my job - a year after diagnosis (unconnected) and two months before I got married. I never stopped working, doing some freelance *stuff* before getting my current role as a fully paid-up member of the local CULTURAL ELITE.
  • Bought another house
  • Became a father
There have been other milestones but these are the key headlines!

---

So remember here when I was being a little snarky about Merck Serono and their MySupport swanky magazine/app? Well, there's a (small) portion of Humble Pie coming up.

The other night I'd just done my Rebif injection when the machine just shut down. Kaput. No light's on, no-one home.

I called the MySupport line and left a message (for some reason I was very late doing my injection - probably some wild party or gallery opening... *ahem*). The next day they called me up, and yesterday I got my replacement machine.

Nice one.

ALSO - Flicking through my latest MySupport magazine, I came across an article about MS-related Cognitive issues.

It was full of all kinds of hints and tips (writing lists? CHECK. Putting keys in a designated place? Hmm... I'm working on it) but the bit that really struck was a pull-out box which said:
Knowing that we might develop memory problems can sometimes make us more aware of every little lapse, but try not to worry - we all forget things sometimes! 
Not rocket science, but it really got me thinking - which came first, the Cog-Fog or the expectation that you will suffer from Cog-Fog?

Similarly, which was first, my bladder issues, or reading about the link between MS and bladder issues?

I'm not disputing that there's a link - but by focusing my MIND on the potential issues, have I almost created the problem before it was due?

By reading all these MS blogs and going, "wow I've got THAT symptom, that makes me feel less like a freak.... but I haven't got THAT symptom... yet... which concerns me", are we convincing ourselves of the problems which may or may not be "in the post" before we necessarily need to?

I'd be interested to hear your thoughts - as I said, I'm not disputing that there's a link between MS and *SYMPTOM Y*.

And as usual I don't really know where I going with this. At the very least it's some kind of weird Audience Development project - "don't read this, it's bad for your health" or something.

Well played, Merck Serono - you've won this time. But I'm still watching you!

5 comments:

Honeysuckle said...

Yeah, kind of agree that a non-existent symptom becomes a 'well actually I might have that', or a 'bit of that'. Example for me, dare I say it, is cog fog? Until MS reared its pretty head, forgetting words was something all my middle-aged friends do/did, none of them has MS (btw 40 is great and 50 is even better. Honestly.) Now there's a name for it, 'cog fog' so now do I have to conform to the cog fog boundaries? No. I'm not prepared to accept this particular label, since the alternative is more acceptable to me. Getting On.

On the other hand, things I wish were imaginary aren't, such as speech hesitancy, knocking into walls (the end of elegance) and ahem, bladder stuff.

But there are pluses in reading about issues that may or may not be relevant to me. Firstly many of my symptoms fluctuate, so I choose my words wisely on an ummmmm, ummm, umm day. Secondly, the great thing about blogs is that the REAL stuff will have been experienced by others and there are often some new tricks to learn. Such as shut the hell up, no-one cares. Ok, I made that one up, but it works for me and those around me.

But some serious issues are thrashed out on the blogosphere, like transition from cane to chair, an impossible leap (sorry), but one made by quite a few people and hey, what do you know, they've survived/made it/adjusted. Subtext, no, in-yer-face-text, so can I. Horrific thought, but it might happen and thank goodness for the blogosphere, where essentially a 'softening up' process allows me to gradually, filter, assimilate and reflect on something(s) that at the moment seems/seem unthinkable.

Should end this in an upbeat way. Have a great birthday and enjoy the next 40 years!

swisslet said...

I hear ya. I do this all the time - both with physical symptoms and mental. I worry about my declining ability to run, but wear and tear on the knees is hardly unusual in a 39 year old man and may be very little to do with a dropped leg and my MS. I'm starting to find it harder to remember people's names sometimes, but again... just because I always had a really sharp memory, doesn't mean this just isn't the way of the world. I used to laugh at the way my dad fell asleep in front of the telly every night too, and now I kinda know where he was coming from. You just gotta take it as it comes, right?

Happy birthday dude.

I don't know about you, but all this healthy perspective on life isn't going to stop me moaning on my blog mind.....

swisslet said...

my bladder has always been the size of a pea, so even if my MS is making the urge worse, I'm pretty much the boy who cried wolf....

Ms. CrankyPants said...

"probably some wild party or gallery opening... *ahem*"

HAHA - must've been the same ones I attended recently.

Brains are curious things; mine is a giant mess of anxiety, so even if I *know* a symptom is almost certainly related to the MS, I have the freakish, hypochondriac, knee-jerk, "oh, that's bound to be [fill in the blank]", because I know The Signs of just about every deadly disease out there. Very tiring, it is.

stevedomino said...

thanks for the comments and birthday wishes - i wasn't particularly DOWN on blogging per se, but i'm historically very conflicted about writing about my MS.

on one hand, if a newly-diagnosed person stumbled (no pun intended) across my blog, i hope it would come across as positive and informative without being utterly SCARIFYING

on the other, i worry that by writing this stuff down - even as infrequently as i do now - i'm allowing myself to dwell on stuff that will (or most likely will or maybe not) happen anyway.

(if you follow my tortuous logic and sentence structure!)

there are other things in my life apart from my illness... like the job i should be doing, obviously...