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.

Monday 20 April 2015

center parcs 2: electric boogaloo

Apologies for the delay in posting this (very brief) update about our recent return to Center Parcs.

This is due in no small part to the inclusion of this photo of a squirrel, which I took at the back of our lodge. I got a media release form signed at the time (OBVIOUSLY) but when I said I was going to put it on the blog it really started getting ugly.

Honestly, everything at Center Parcs is SO monetised... I've had to deal with the squirrel's agent (and its Union), and the negotiations over the usage fee [way more than I ever imagined!] - at one point I considered pixelating his face, but even then it's so obvious who it is - honestly, I wish I'd never bothered, but it's a nice picture - so there we go.

A word of advice: if you want to take cutesy pictures at Center Parcs, think through what value it's really going to bring. Is it worth it?

Anyway, headline figures from CP15 - it's still great and OVERALL we had a great time (I'll explain the qualification in a later post), but the communication from CP about accessibility is still confusing at best.

Long-term visitors may remember what our biggest bugbear was previously:
The day before we came home, we went into Guest Services to see about arranging a bus to pick me up in order to collect our car in the morning - check-out was an ungodly 10am and we thought this might be a handy bit of fatigue management - certainly better than walking across the park, driving to the lodge, loading up, driving home...

I called security... and they said that they didn't have any drivers in for the next day. Considering the fact that the arrivals and departures are pretty much all on the same day, this seemed crazy. I explained that the reason I was enquiring about the bus was that I am disabled (response: "Are you in a wheelchair, sir?" Nurrrr....), and then he asked if I had a Blue Badge, because if I did, I could park outside our lodge overnight and load up in the morning.

Again, I understand that Center Parcs is a car-less utopia (and it was one of the most attractive things about it for us) - but it would've removed a lot of our worries about packing up and leaving with a 3-year-old at TEN A.M, followed by an (admittedly short) drive home if someone had mentioned this in advance. Maybe they don't want people to take the piss, which we certainly didn't want to.
So this time we knew what the situation was and the night before we came home I went to Guest Services to double-check that this was all cool. They said that it was, although as I had a Disabled Driver's Blue Badge (Hi there!), I could have just parked up outside our lodge all week.


Anyway, I found my car and drove out to the front gate, explained to the security guard what I was doing, and when they clocked my Blue Badge, they said, "just so you know for next time, you can leave your car outside your accommodation for the week. The only time it'd be a problem would be if you started using it to get around the park during your stay".


Like I said before, one of the things I like about Center Parcs is the lack of cars, so it's not as if I'd be using it to cruise up to the Sub-Tropical Swimming Pool or the Pancake House. Plus as I mentioned before, it really is all very accessible, so we wouldn't need it. And in saying this, I totally understand that my accessibility needs might be considerably less than those of other people.

But as it stands we have a situation when disabled guests are forced to pay additional fees for accessible accommodation in order to manage fatigue (for a HYPER-SPECIFIC example). In our own situation, the rules with regards to parking were so unclear that I unloaded the car at our accommodation, drove around to find a parking space, walked back to the lodge and wiped myself out for the first full day of our stay.

The emotional and psychic fall-out from this particular situation will be covered more fully in my next post!