Tuesday, 21 April 2015

emotional weather report

this great illustration is by Stephanie Ayers (image taken from here)
And a line of thunderstorms was developing in the early morning hours
Ahead of a slow moving cold front, cold-blooded
With tornado watches issued shortly before noon Sunday
For the areas including the western region of my mental health
And the northern portion of my ability to deal rationally
With my disconcerted precarious emotional situation
It's cold out there
- by the mighty Tom Waits
Like most people in the crazy world we call WORK, whenever I have some time booked off I tend to work way harder than I would normally. With my (our?) peculiarly compromised health condition, by the time I get round to my days/weeks off, I REALLY need some time off.

Don't get me wrong, we had a great time at Center Parcs last month, as I mentioned yesterday. But it coincided with a time which was one of the lowest I've had in a few years. Physically, I was having real problems getting around - on top of that (or maybe BECAUSE of that), I allowed my old bladder issues to rise up. It's astonishing how many 'just in case' trips to the loo you can have! It's easy to make light of it now, but it was a bit of a kicker (to put it mildly).

It was hard to feel like I was letting my family down and becoming a millstone. And by the same token, it was hard for Mrs D to see me struggling and succumbing to old problems.

On top of all that it must have been really frustrating to see me not taking better care of myself, especially with regards to fatigue management - the parking issue I covered before was a case in point and I really didn't need to do any of that walking around.

After a rough couple of days we determined to have a good time and overall we did. But it cast a shadow, which carried over into our return.

Over the next two weeks I noticed that the side effects from my Rebif injections were really starting to be debilitating. Like most people on this brand of beta interferon, I inject on Monday, Wednesday and Friday. But recently I'd been feeling BLOODY AWFUL on Tuesday, Thursday and Friday. So at best I was good for one day a week!

I've been noticing on Twitter recently that a number of Rebif users have been jumping ship for newer, less-intrusive treatments - a lot of them oral therapies.

So I put in a call to my MS Nurse team, described what seems to be going on, and I have an appointment with them next week to talk about my options.

In a post-slump period of TAKING NAMES AND KICKING ARSES I'm also interested to see what the deal is with Fampyra, the mythical currently-unavailable-on-the-NHS (?) walking treatment.

As I've been struggling with my walking in particular*, I've also asked my GP to refer me back to the Physio. And as requested by my boss, I'm getting an occupational therapist to look at my workstation to see if there are any modifications which could make things a bit easier..

Who knows how long this energetic brand of proactivity will last? Let's find out!

* incidentally, please don't ask about the walking to work, it's really gone out the window and it makes me feel worse than anything - especially when SwissLet of this parish is running the bloody London Marathon this weekend for the MS Trust - I've slung him a few quid, so should you.


swisslet said...

Fampyra? Mistress of the Dark?

Cheers for the shout out and for the donation, Steve. I know how lucky I am to be in any kind of a condition to run a marathon (full stop. Nevermind the MS, I reckon that it puts me in a pretty small percentage of 41 year olds, to be honest). I was at MS clinic the other week, and the doctor pretty much said as much and suggested that if I stuck around in the waiting room for a couple of hours, I'd see how lucky I really am. He meant it nicely (as he was referring me to the incontinence clinic!) but he didn't really need to tell me because I'm already well aware of it.

Will be interested to read your journeys towards the world of oral therapies. I'm on the long-needles and weekly avonex, but I tolerate it well and I'm not progressing much, so why change?

stevedomino said...

ironically, since making the appointment with the MS nurses, i've been feeling pretty good - probably because i've been taking positive steps to manage my condition.

having said that, i'm PRETTY MUCH OVER the injection 'thing' - plus tonight is my least-favourite site (right arm) so i'm glad i've got it booked in!